Things & Stuff in the New Place

Various Updates

Simon has started the first grade at our local elementary school. I never would've predicted this, but I kind of miss the "Learning Log" method of communication his Kindergarten teacher used. I don't feel we have a real sense of what he's doing during the day or week, though the teacher sends home a short newsletter each Monday with what they will focus on during the coming week. Simon has not given a ton of specifics; I've tried not to ask a million questions but info is coming out only in tiny bits and pieces. He reports he's made several friends, boys and girls; two boys and one girl supposedly live in our neighborhood. One of these, a boy in Kindergarten, has been confirmed by meeting kiddo and mom. After the first week of settling in, Simon has started riding the school bus, which I was really worried about initially (especially when I was waiting for him at the stop on the afternoon of the first day and he wasn't on the bus, but that mix-up was quickly cleared up) but he appears to be enjoying it.

I cannot imagine David riding the bus one day; I'm glad he would have Simon to look out for him. For me, elementary school bus riding was fine; we had a really strict driver and assigned seats and all was well. Middle school was awful - we had this totally useless older man as our driver and he basically never intervened in anything. This culminated in me coming home from school one day in 7th or 8th grade, in tears because some same-age boys had been yelling to the male driver & passengers of a car following the bus, "something about them having sex with me" is what I remember sobbing to my Mom. I was distraught but didn't really want her to call the school because I was afraid that after whatever suspension might occur the problem would only get worse. She did call, and I don't know what happened exactly, but it did not happen again. Then in high school, the bus seemed to be some sort of DMZ/No-Man's-Land where anything got swapped around (cigarettes, girlie magazines), but everyone pretty much left everybody else alone.

I don't think we had any "students with special needs" on our bus; this was likely an era when anyone with any disability was relegated to the "short bus" and isolated in Special Education classes all day and you never saw them. I am generally really nervous about mainstreaming David, although I know it's the right thing to do - I'm scared to death he's going to be bullied. Matt is much more optimistic about this than I (though I'm sure he's worried to a degree); he points out that rather than predicting all the awful things that might happen, we can instead see this as an opportunity to see exactly how great his peers and the school staff can be - perhaps any teasing will be minimal, and if/when it does happen his brother and friends will take up for him in a way that is of course non-violent and yet takes care of business.

On this note, we did receive some reassurance this week in a little guy named Nate, who is in the first grade at Simon's school but in a different classroom. Nate has Down syndrome, and we'd been referred to speak with him mom almost as soon as we moved here but dragged our feet about it (see "Mac & Cheese & Overwhelm-ment" for our history on this). Matt finally called her on Monday and had a delightful conversation; she had so much information that he ended up taking a lot of notes. Then on Tuesday when we went to the school to sign Simon up for Cub Scouts, there were Nate & mom and they were equally delightful in person. I recognized Nate because his mom'd told Matt there was a photo of him on the local Down syndrome association's website and we checked it out. He's a pretty cute guy, a year older than Sy and maybe a couple inches taller (this indicates how short Simon is, kids with DS are typically pretty small). The first thing Nate did at the Cub Scout thing was to run over to one of the displays and begin flipping through a scrapbook, pointing at photos of a camping trip and saying (excitedly, clearly), "Mom! I want to do this!" He played with Simon while I filled out forms and talked to his mom - they were racing cars around with a couple of other kids. Seeing his "regular kid-dom" was awesome. I don't know if he rides the bus or not, or if he's had many problems in the school, but there should be the opportunity to follow up.

David, of course, is delighting and amazing his entire preschool. We had a scare (on the same day Simon wasn't on the bus) when David slipped out of the school through a door that was propped open, during the Early Pickup time (some kids are done at 12:15, David & others go until 3:15). The staff didn't realize it, and another parent brought him back inside ...  I ... I'm glad Matt was the one to pick up David that day, and that he was the one to be informed about this by the staff. We did not ask where he was (how far he got) because we didn't really want to know. When Matt initially told me, it was easy to accept the news calmly because it was long over and David was fine. But of course the longer I thought about it the more upset I became, imagining various horrible outcomes. And they are horrible - the Quaker meeting house where the preschool is housed is at the intersection of two of the busier streets in the New City, and .... even thinking about him being in the parking lot, out back of the building, was bad enough. I mean, imagine, right? My beautiful 3-1/2 year old child with Down syndrome, wandering around. Jesus.

Matt said the preschool staff were "appropriately mortified" at what happened, and that by the time he picked up David they had already completely revised the way they will do pickup from now on. I mean, I can (sort of) see how it happened - I've never been there at early pickup, but based on later pickup and hey, it's a daycare, there are kids and parents and backpacks and lunchboxes and everything. So now everyone will simply be much more centrally located, and one of the staff people will always hold David in her arms.

Matt and I have (pretty much) gotten to where we can joke about it: (1) Matt has a little joke about entering the Joanna Realm of Reasoning, in which I propose that under certain conditions we should get things for free. When our landlord has not cashed our June rent check by the time the July one is due, June's should get to roll over. When the pediatric anesthesiologist pokes a hole (okay, makes a tiny scratch) inserting a tube in David's throat before his heart surgery, we should not have to pay for that portion of her time or any of the supplies. And, every time you let our child wander out of his preschool we should get $100 off that month's tuition - hey, it's an expensive school, so ... (2) A couple days after it happened there was early dismissal and the afternoon was devoted to parent conferences focusing on "hopes and dreams" for each student. Matt and I were pre-conferencing and he asked if I had anything in particular I wanted to ask them about. My response: "My hope? That they don't lose him again. My dream? That they don't lose him again."

Other than that (!) we are quite pleased with the school and David's new speech therapist and Special Educator, who each visit twice each week. The speech therapist is really emphasizing signs over spoken language at this point, and David is picking up quite a few: apple, cracker, food/eat. His signs for "more" and "please" are now much more distinct ... we think he is beginning to recognize the colors red and blue, and the shape of a circle. The other day at church we were in an office that has a painting of a single foot, with the caption Step out in Faith (or something like that), and David pointed right at it and said "foot," as clearly as you could hope to hear. He does this a lot - he'll either parrot something we say, or label something and we're so excited, and then he never does it again. Oh well. He's coming right along :)

I am officially on the job search trail; I've come across 2 possibilities that are pretty exciting but both long shots a couple that are okay and reasonable to hope to get but I haven't heard anything back yet, and about a thousand that I am totally unexcited about, but which I could probably get hired for pretty easily. Stay tuned ...

It's Been Awhile Since I Rapped At Ya

(If you don't get the Jim Anchower reference I may have to boot you off this site)

It has been awhile - as you know we've been busy with the move, which I would consider to *nearly* be over. We have most stuff unpacked, and all the little things that were out of order with the new place are back in order (air conditioner, leaky tub, dishwasher not draining). The house is coming in to some sort of order, and we really like it. It's hard to tell how close-knit the neighborhood is, but people are out and about quite a bit (running, walking dogs, riding bikes) so I hope that's a good sign. We appear to have two different neighbors in law enforcement, one uniformed officer whose cruiser is usually parked just across the way, and a detective or something a ways down. That's nice. We've only met one person so far, but I'm sure we'll talk to others pretty soon.

The move itself, the day with the truck, was horrible, not so much the trip itself as the 18 or so hours preceding it, when we realized the truck was too small and then learned that U-Haul, due to a history of lawsuits, will not rent a trailer to pull behind an Explorer. I tried not to beat myself up about it too much because I know it's an inherently stressful process, but it was so frustrating because I'd been packing for three months, and how in the world was there still so much left? Oh, well, it's all here now, after a trip back the next day by Matt to pick up all the stuff we had to leave on the back porch.

Simon and David are settling in, and Simon is excited to meet new people. He's begun a week-long day camp through the new church, and David's started the half-day preschool there. Today Matt suggested we start David in full-day preschool somewhere, in August, and I agree. The little booger is as cute and adorable as ever (Matt has officially termed taking him out in public as, Winning Friends and Influencing People) but he is a lot of work these days - constant supervision. Constant. Especially in the new house, where some stacks of boxes remain, not everything is 100% childproofed yet, he can start the dishwasher in a heartbeat and the oven is a lot easier to open than the one in our old kitchen. Constant, I tell you. It is wearing me out, just the four hours between picking him up from the church and when Matt gets home after work.

My main task for David these days is setting up outpatient surgery for him to get fillings in his two front bottom teeth. Yep. Down syndrome makes him more prone to gum disease, not cavities, but his meds (especially the nebulizer ones) make him prone to cavities. Because he's so young they will sedate him (like with an IV, not just nitrous oxide or whatever), and our Blue Cross will cover the anesthesiologist but not the actual dentistry work, so we are in negotiations with the hospital to see if we can get some sort of discount from the $1500 - $2500 it might cost. He has not previously had dental insurance because it's so expensive and in my experience not worth it, between the premiums and the yearly maximum, and the BCBS lady basically told me not to waste my money until we had a better idea of what his dental situation might be. Well, I guess now we have a better idea .... I also have to get him set up with the New County's school system to begin speech therapy and other services - I made an initial contact with the Preschool Coordinator a couple of months ago, but she said there wasn't really anything she could do until we got here, so ...

This has been a whole lotta nothing, I suppose, but that's about the level my brain is functioning at these days. Here are some lovely photos to enjoy, and I'll try to make the next post a little more coherent:

This is at my sister's house; she has this giant (glass) jug full of wine corks, and on each visit the boys delight in taking them in and out. I figure hey, great fine motor skills practice for both of them:

                

       

My two boys in a delightful wig, and David helping to pack (none of the things he put in the box were designated to pack, but he was so cute and industrious, and so proud of himself for helping, that he can help me out any old day).

And here are three shots of my wedding dress - came across it packing. I did not have bridal portraits taken, which I regret because the dress is really beautiful, but here are a few.

 A close-up of the hem, the back of the dress, and the neckline. 

It's best from the front, the neckline and an empire waist, but it looked sort of droopy, not being on a dressmaker's dummy, so maybe I'll show some of those later.

(And yes, in fact, I did have to move a few stray Kix out of the way to

 take the close-up of the hem. How did you guess?)

Yawn ...

Not sure what the next couple of months will hold as far as "ability to post/blog." We are starting to realize this moving thing is for real - this weekend Matt and I are going to visit about 7 rental homes, and get an official-ish tour of the new church. We've started to pack up some books, pottery, etc.; I actually got a package of color-coded Avery moving labels but I think that may ultimately only serve to make me think I'm further along than I am ("I have labels. I'm obviously way too organized to have to worry about this."). Something about that last sentence is really awkward, I admit, but I'm not currently motivated enough to do anything about it.

Inclusion and Dis-clusion

Last week David went to our church's afterschool program, Wonderful Wednesdays, for the first time. It's for kids 3 - (2nd grade? 5th grade?), so David is among the youngest kids. One of the missionaries our church helps to support is home on an extended leave, and she loves to play the guitar and lead the kids in singing. The kids were all in a semi-circle around her, with David on my lap unless he was up wandering around. For the WW program, we pick up kids from both the elementary schools in our little town, so some go to our church but a lot don't. I noticed a lot of kids looking at David; I've sort of come to dismiss younger kids doing that because I know they'll stare at anything. And a lot of them were watching me sign some of the songs pretty closely. So I introduced him as Simon's little brother and added that he can't talk much yet so that's why I'm signing. I encouraged them, if they had any questions about David to ask me later. 

What to do, what to do ...

Our two little guys are doing well, chugging right along. David had his 3-year-old checkup last week; again it's a relief to be reminded by the pediatrician of exactly how far he's come. He has finally broken 25 lbs; he's about 32" tall. He was over 25 lbs a long while back, then he was sick and vomiting, and he's only now getting back up there. There were no shots at this visit, thank goodness, and we finished up by having lunch with a former colleague and then visiting my last job site to see a couple of other old co-workers. Simon brought home an excellent 3rd-grading-period report card; everything was the same or improved from the last time. Matt in particular was really proud; he made a copy of it to send to his parents. He (Simon) continues to regularly amaze us, most recently me during a phone conversation. I had to go out of town overnight for a family (of origin) issue, and it's probably the best phone conversation I've ever had with him. We didn't talk about anything special, just his day at school and home, but it felt like a much more grown-up conversation, probably owing to the fact that he didn't recount anything having to do with Star Wars/Angry Bird, Ninja Turtles, or one of the various other mass-marketed cartoons he has come to love. And I saw him getting dressed the other day; it was a "free dress" day at his uniform school, I encouraged him to wear jeans and I was shocked when he agreed. He'd usually much rather wear sweatpants or something similar, and watching him suck in his little belly to zip and snap the jeans was just funny. The jeans are a little too long and without his shirt on yet, he looked really tall and grown-up, more like a 7 or 8 year old. "He looked really tall" is not something you are going to hear much in association with Mr. Sy.

Pigs and Guns and Knocking out Down Syndrome

This past Monday was David's Transition Meeting with the county school system, to write his first IEP for his transition from Early Intervention to the school system when he reaches age 3, next Thursday. I have attended a number of IEP meetings as a social worker, and most of those meetings were about teenagers with behavioral issues in addition to their learning disability, and none of those meetings were as positive as this one. David's EI speech therapist and case manager were there, as well as the speech therapist, psychologist, and special educator from the school system. The special educator will take on the same kind of general role that his Community-Based Rehabilitation Specialist has had under EI - she will basically just play with him, doing some motor skills development, some speech therapy, a little bit of everything. We discussed the outcome of everyone's evaluations, and spent a lot of time on general David Admiration and Adoration.