Monday, December 27, 2010

Children need...

My children have, despite recovering from their little bouts of contagion, adapted pretty well to the new surroundings here at Grandpa's house and the deviation from the norm that naturally occurs when taking the family on vacation.

Fun for all--a BIG snowstorm. There are piles of snow all over the place, with the totals in this area of New Jersey being around two feet. Yesterday, as the snow was beginning to fall, our children and my brother-in-law's older two children excitedly played outside. He and the kids came here from California, and the last time they saw real snow was five years ago, when they were here for Grandpa's 70th birthday. And the younger one was only 2, and barely remembers. Today, with there being PILES of the stuff, they again went outside to play. I figured that 2 feet of snow wasn't so great for my kids being that they're both on one side or the other of 3 feet tall, and that's just not enough wiggle room.

I'm sure that schoolchildren everywhere on the East Coast are very disappointed to have gotten this amount of snow yet aren't missing any school, since school is out for vacation anyway. It's like taking a sick day when you're actually sick (for the record, I never liked taking sick days because, shocker, I loved my work, so I only took sick days when I was REALLY sick) and can't enjoy it. I had to explain to the Cali kids about snow days.

We've been here several days, and the boys are just fine. They feel better, if not completely well, and they're in the groove of things here. They know where the kitchen is. They know that Grandpa keeps most of the toys in the basement and that's where to go to play with toys. Meatball knows where the remote control is and also knows how to turn the TV on. Generally we catch him in time to take the remote and put on something that he wants to watch.

We haven't all been eating our meals on the same schedule. The California crowd has been a bit jetlagged, and my kids are not waking up at the same time, as they have a tendency to do at home. Usually, breakfast at home with the boys happens with both together, and me making them whatever they like only to have them finish by the time I make the mistake of thinking that I have the luxury of cooking a breakfast burrito (wheat tortilla, 2 eggs, cheese, veggie sausage, salsa, and plain yogurt or sour cream, with avocado if we have it) or even egg and cheese on a bagel. Meatball can be stalled by the buckles on his high chair. But here, one kid gets up at a different time, I get up at a different time than Musical Daddy, and it's never the same. So breakfast is...whenever....and then my kids want snacks, and sometimes Meatball has a nap after snack and sleeps through lunch. I'm not worried about them eating enough, though, considering how The Boy wanders into the kitchen and says "I am hungry!" multiple times a day. He also calls meals by name although he rarely gets the right he'll wake up in the morning, come downstairs, and sit at the table, saying "I want some dinner."

It's been slow around here, though, since we haven't been going places or making plans, yet still fun. We have toys, books, the Wii, computers and iPods/iPhones/iPad (not ours), and TV of course. I brought some craft stuff as well. Our 7-year-old nephew has been great with our little ones, which is nice. Not that our 11-year-old niece hasn't been good, because she has, but he has been chasing the boys around and wrestling with them just like they do with each other. We grownups have also been getting along well. Not that I'm surprised about that either...because we're acting like grownups.

One thing that has not happened this trip is that The Boy has not slept one second away from us and has been insistent that we be right there with him. Meatball has spent most of his sleeping time in the crib but also spent some time by my side at night. It's a lot easier in a king-sized bed. The Boy has definitely been more in need of affection and been less interested in going to bed at a decent hour and at least starting his night in his own bed, as he used to do. I think this started before we left for our trip, though. He's just needed a little extra care.

He has also been more in need of verbal confirmation, whether it is in response to something he says (like when he purposely mixes up the beginning of Chicka Chicka Boom Boom, saying "A told T!") or, when he is building letters or numbers out of any building material he can find, he will say the letter/number and we have to at least say it back before he'll go on.

Musical Daddy and I agreed that we never want to be too busy to listen to our children, even if they're saying or doing the same thing OVER AND OVER, as it is still exciting for them. We don't want to stop them from talking to us or telling us jokes. We don't want to put them down or belittle their efforts because, as much as we don't want to think about it, there will be other people in their lives who do exactly that, and we want them to be able to stand strong against that with our help.

I guess it goes back to manufactured hardship, as I posted about a little while ago. I don't need to get my kids into the habit of NOT talking to us or sharing things with us just because there will be people in their lives who won't always have the time.

Friday, December 24, 2010

An Auspicious Beginning

Tuesday night was really when it started but by Thursday morning, there was no denying that The Boy had a raging case of pink eye, plus a horrible cold. That along with the nasty bruise on his face from Sunday's face-plant into the headboard of the bed has caused him to look like no less than a walking disaster. Poor little guy.

Meatball seems to have a little bit of the itchy eye as well, and I think he had the cold first. We're treating both kids for the pink eye and hoping that it will clear up soon. They both look better but with their colds and all that drainage from eyes and nose, they get crustiness on their face. Yuck.

Yesterday we cancelled the lessons that we were supposed to teach on our way out of town, because part of the plan was to bring the children, take turns teaching and watching them, and let them play with whichever kids were not taking lessons (3 kids total, ages 7, 5, and 3. The older two take lessons with us). No way were we going to show up at their house and spread the pink eye love.

We called my aunt and let her know that the kids were so afflicted, and was it still okay for us to stop there. She said to go ahead and come anyway. Turned out that she was less concerned about the typhoid children than everyone else, and because we know better than anyone what it's like to want to avoid germs and illness, we drove on to New Jersey after dinner instead of spending the night. She's smart--she set out certain toys that are easily washable for the kids, and we did our best to keep them in certain areas of the house. Several times I followed one or the other child wiping any places that they touched.

We arrived at Grandpa's at about 9:30, which was around the time that I began to feel dizzy, weak, and generally crappy. By the morning, I could barely move. So now I'm sick and pretty much non-functional in terms of chasing around the children, who are sick but don't know that they're sick. Meatball is very interested in everything that he shouldn't be touching and has to be watched like a hawk. And there seems to be a lot that he wants to touch and shouldn't.

We have a variety of plans over the next few days that I'm hoping to be able to keep, but it is quite difficult when moving oneself is an issue. I didn't even feel well enough to stand in the shower; I took a bath in the hopes that I'd feel better. And I do, a little bit. But not much.

So, friends, if I haven't made plans with you yet while I'm visiting, please know that I'm waiting until I feel better. We will be here through New Years.

Wednesday, December 22, 2010

Do you hear what I hear?

IEP meeting for The Boy this morning, and hearing aid appointment in the afternoon. He got the hearing aids and seemed to tolerate them well. Of course, he is usually good for doctors and medical personnel, which includes therapists such as his physical therapist and people who evaluate him. His attitude seems to be, "So you're JUST going to stick something in my ear? Or ask me to say stuff? And NOT jab me with sharp things or pump me full of stuff that makes me feel crappy? Where do I sign up?"

So the hearing aids are another thing to check and maintain. We need to be very careful with them. There are a few simple maintenance things, plus battery changes every 2 weeks or so. Batteries are covered by insurance, thankfully.

Also, The Boy has a nasty bruise from banging into the headboard of our bed. Jumping, like a monkey. He has a cold, and he seems to have some pink eye as well. Looks pretty bad. Still an improvement over last year at this time, when he was in the hospital with what was probably RSV.

Leaving for our trip tomorrow. Should be fun.

Monday, December 20, 2010

Get Recentered

I am fortunate to subscribe to a number of great parenting blogs and also fortunate to have friends online and "in real life" who have great perspectives and interesting viewpoints to share.

I had a friend repost something about our society's treatment of babies and how it really is ridiculous that we mothers carry this baby inside of us and nurture him/her, only to be encouraged to put him in the carseat and leave him there, or put him down in a bouncer, certainly NOT pick him up right when he cries because we'll spoil him, and not to dare have him in our bed, and better to just put him in a crib in a separate room. Um...huh? I feel like these various baby contraptions can have their place, because babies do like to get down and play and hang out a little bit, but they also need LOTS of close contact with people. Mother in particular although I know that in our house Daddy has that certain kind of magic, particularly with The Boy. You know, the kind where you pick up a baby or small child and they instantly release all tension and relax right into you, because they trust you. Oh, and we definitely have a babies-allowed policy in our bed. They're snuggly.

But what that actually reminded me of was this post called "Why Not" from the wonderful woman over at Authentic Parenting. Why would we want to condition our little babies to spend so much time alone, and learn to self-soothe? To prepare them for what? Why, similarly, do we say "no" to our children in situations where there's no real reason for it? The author references a "false sense of scarcity." Not to say that real scarcity isn't a problem, but that preparing a child for the world in which "nothing comes for free" when they're not really at a point where they need to learn that lesson is a little foolish. I admit that I'm guilty of this sometimes, and I plan to think twice about it. Not so much enforcing a sense of false scarcity, but that sometimes I say "Well, when he is in school, he won't be able to do that" or "when you're not the one here, he doesn't have that option." There's no point in "preparing" for hardships that may or may not come, and if they do come, they may not be hardships after all. Better to just let them enjoy what they like now and do things the way we like instead of trying to create problems where none exist, just for the sake of "learning." Learning what?

My lighthearted example is that The Boy frequently asks us to draw letters and numbers and pictures for him, rather than drawing it himself. I keep thinking that when he starts preschool, he won't be able to ask his teachers to do that for him. But I've noticed that he really does do it himself sometimes, and when he wants us to do it, he watches us intently, studying each part of the process, and knows how to write just from watching us. He can do most letters and most numbers, with some backwardness but if he says that something is a G, you can tell that, yes, it is. And that's pretty good. I don't know that he would ask the teachers to draw things for him, and even if he does, the worst that could happen is that the teacher says no and moves on to something else. He might be "over" that by the time he starts school and will have moved on to writing it himself just to show he knows how.

But anyhow, I've read a few others, reminding me about positivity and affection and all that other stuff that is of paramount importance to me, and it is refreshing to shake off some of the baggage.

Oh, and I also mentioned our potty struggles to the physical therapist today, who shrugged her shoulders and said that it's The Boy's job to finish the process, and he will, soon, when he darn well feels like it. And that also feels better to me, because another professional whose opinion I value has said that.

Speaking of positive and recentered...Meatball is up and cranky.

Friday, December 17, 2010

At my best, at my worst

This week was a perfectly reasonable week, but I think I felt better about the children and myself, so we had a better time.

I'm still at a loss as to what to do about The Boy and his potty habits. When he feels like it, he goes and keeps his pants clean and dry. When he doesn't feel like it, he has "accidents" which I don't even think of as accidents, because that implies that he tried to get to the bathroom and missed. When he doesn't want to be taken to the bathroom, the temper tantrums begin, so it is even difficult to preempt the messes that ensue. He has these good streaks of several days without accidents, and now is not one of those times. And he's been about the same level of "trained" since his 3rd birthday which was 3.5 months ago. Last week was actually was a decent week this week except that today was bad. And last week I was a lot more angry about it, for no real reason.

I even called the pediatrician's office today and spoke with the nurse about it. She asked if there was a physical issue. There isn't--he's been to a GI doc. She said to try and get him into a good routine of going to the bathroom after meals or whenever it seems like he's been having accidents. Here's what happens: "I too busy to go potty! I not need to go!" 2 minutes later: "I too busy! I not need to go!" 30 seconds later...

In general, the temper tantrums abound for any number of reasons, because he is The Boy and because he is 3. He threw a fit for what seemed like no reason in Trader Joe's today, incited by the fact that I wanted to buy rice pudding. I told him he didn't have to eat it and it wasn't for him anyway; it was for me. But that wasn't good enough. Some woman tried to talk to him, which is annoying but acceptable, but then she tried to touch him, to which I responded rather harshly, "Don't touch my children!" Sorry, I just don't take kindly to strange people touching my kids. They're actually very affectionate and enjoy it when people play with them and sit with them and hold them and whatever else, but that's people that they know, not complete strangers in the grocery store. I was thinking about seeking her out to tell her that having had a cancer kid, I get paranoid about that sort of thing, but I wasn't in the mood for the lecture that I'd probably get, and I just don't care that much what some strange person in the grocery store thinks. Maybe next time she'll think twice before reaching out and touching someone else's kids.

Successful outings this week included another trip to My Little Outback, the indoor playground, on Monday, and the Carnegie Science Center on Thursday with another friend and her twin girls who are a little younger than The Boy. The boys have a great time at the indoor playground, and not only is it small enough and contained enough that I can let them wander and do as they please, but they also have a person on staff whose job it is just to help out with the kids and make sure that everything is being played with appropriately, so that person was helpful when it was time to round the kids up and go.

As for the science center, I need to remember next time that there is an awesome water play area without awesome smocks or rain jackets, just ineffective ones, so a change of clothing is in order, and that area is to be visited either first or last. It's a part of a whole exploration area specifically designed for the younger set, with a ball "factory" that has different ways of moving ball pit style balls up to the top, to be released onto the children working below to get the balls back up to the top. There are tunnels, blocks, and things to climb. Elsewhere in the center, there is robo-world, and a big electric train setup. There is a sound exploration area, and a light exploration area as well. The Boy was very fond of the shadow capture exhibit, and Meatball even did it a few times.

Today was a slower day, with just that trip to Trader Joe's, followed by some time playing outside in the snow (which wasn't good enough snow for real snow play) and some lunch. I wanted to get the kids back to napping at the normal time, which worked for Meatball but not for The Boy. So I had a lousy nap while he pestered me and watched a movie, and he took a nap with my mother from 3 to 5:30. So he is still awake.

It is important for me to remember that my children do have their own needs and interests that may differ from what I'd like them to do or what they really should be doing, so we have to come to some sort of consensus. Occasionally it means that I just drag The Boy along and suffer the temper tantrum until he gets over it. I ended up yelling right back at him a number of weeks ago, but that didn't feel right to me. It doesn't really feel right to me to yell at him, although I'm less concerned about yelling "STOP!" at him when he is trying to walk out of the bathroom with that moment's poo accident still stuck to his behind than I am about purposely trying to get him to toe the line by way of fear and wrath. I don't really do fear and wrath very well anyway, and I'm sure he knows it. Or maybe he just wouldn't recognize it if he saw it, because when someone is trying to talk to him about something he needs to work on or correct, he just starts talking about an entirely different topic. It is very frustrating, but not dissimilar to what adults try doing to children when they don't want them doing something.

I'm glad to have Musical Daddy, who is so gentle and patient with the boys. My parents, too, are great for that.

I'm also glad to have rehearsal tomorrow morning from 9 to 12 and a gig from 9:30 to 12 tomorrow so that someone else can negotiate the toilet with The Boy. Or clean up the poo.

Tuesday, December 14, 2010

Short Oddities

No, I'm not calling my children oddities. Not that I haven't thought it.

I put Meatball to bed at around 8PM. When he woke up for some nighttime milk (as he always seems to do right when I close my eyes to sleep; I swear he can hear them), I went in to get him and he was shirtless.

We've already learned never to put him to bed without pants over a diaper, because he will take off the diaper when it gets wet/poopy. But the shirt? No idea where that was coming from. Particularly since it is Winter, weather-wise even if not by the calendar. And it's cold!

Meatball takes himself to the potty. He hasn't actually gone in the potty or the toilet in awhile, but now he takes himself to the Elmo potty in the downstairs bathroom, sits for awhile whether he has pants on or not, and then climbs the stepstool to the sink to wash his hands.

The Boy remains in that "almost" stage of being potty-trained. Keeping him accident-free depends on some combination of parental diligence, dumb luck, and his deciding that he wants dry pants instead of wet ones at that moment...because he'll have "accidents" just because he feels like it sometimes. Not much to be done about that.

We are planning our trip east. We leave next week on Thursday, stopping in Harrisburg, and we arrive in NJ on Friday, probably by lunch time.

I keep meaning to write a long and meaningful post about health care reform but I just haven't had the sitzfleisch.

Monday, December 6, 2010

A quick check

It's been a little over a year since we moved here. Since I gave up the idea of returning to the job that I loved. Since we sold the house that we owned and cared for and worked on, in a neighborhood that wasn't necessarily full of lots of community togetherness but still had great amenities for our family such as the convenience store and drugstore, and comic book store, within walking distance.

Looking at us now, we don't have the jobs that we thought we might have. It's just been too hard to get in the door. We have some things. We're making a little money. We have some private students. But we're still living in my parents' house with no end to that arrangement in sight.

I get WIC food for the kids, because we qualify financially, and it definitely helps.

Certainly not how I thought I'd be doing things at age 30.

But you know what? I look at my boys. The Boy's life was likely saved by our moving here. He may have survived, but he probably would have been damaged by the additional chemo treatments, not to mention the blood pressure cocktail that really wasn't supposed to be long-term for him. Who knows how much worse his hearing might have gotten? Who knows what his kidney status might have been. And Meatball is SO happy and healthy, and so loved. He gets so much positive attention and has been consistently thriving since we got here.

Ask me to choose--our careers and sense of independence and earning potential, or a better quality of life for these children?

Don't forget that we chose what is best for the children. And if you'd like to criticize me for living with my parents (who have been so generous with their resources, space, and time), after having been a homeowner and a person with a thriving career (which may have been flushed anyway, given the climate in New Jersey education), please keep in mind the choices that we made, and would make EVERY day of the week, for our children, and then remember that you probably have no room to talk about us.

It's the children. Every. Single. Time.

Wednesday, December 1, 2010

Hearing and Listening: Evaluation Reports

The Boy has had a busy couple of days. Yesterday, he was seen by an otolaryngologist (that's ear, nose, and throat doctor) to confirm that he is eligible for hearing aids and doesn't have structural issues afoot that caused his hearing loss. No, for those keeping score at home, that's another in the win column for the chemo drugs.

This morning, he had a hearing aid appointment. This was where the audiologist talked to me about hearing aids, measured The Boy's auditory response, and fitted him for the molded piece of the hearing aid. Also, The Boy got to pick out what color the actual electronic piece would be, and he chose dark blue. We asked him several times, and showed him other colors, but he was sure that he wanted the dark blue ones. That's the piece that goes behind the ear. So it will probably be pretty conspicuous. That's fine, though, because a conspicuous piece of equipment means that we'll see it more readily and pay attention. And, you know, keep it away from dangerous situations.

We were glad to have our good friend/adopted aunt come with us for the appointment. She has experience with little children in preschool settings and, more to the point, has hearing aids herself.

We need to decide whether to have his next hearing aid appointment, when they'll actually be ready and be given to him, before or after our trip to New Jersey. On the one hand, having them for the trip means that he will get to wear them and be used to them so that when he comes back and starts school, he'll already know how to wear them and tolerate them. Additionally, while on the trip, he and Grandpa can compare hearing aids, and it might make him feel better about wearing them knowing that Grandpa has them too.

On the other hand, not having them on the trip means that we don't have to worry about getting used to a new piece of equipment while away from home. I'll see what Musical Daddy thinks (whether he tells me after reading this blog or whether the two of us actually have a conversation...hard to say which will come first).

Also today was his appointment with the Early Intervention Services through the Pittsburgh Public Schools. If you're familiar with early intervention, you know that there's one division that generally goes through the state and takes children through age 3. Once they get to age 3, services are available through either the school district or another organization that might serve children in several school district, and that takes them up until they get to school itself.

Early intervention covers therapies such as physical therapy, occupational therapy, speech therapy, feeding therapy (which is part of speech therapy most often, depending on the specific issue), developmental therapy, and hearing and vision service as well. The Boy received OT briefly and PT for awhile in New Jersey.

When I arrived at the meeting, there was a person who seemed to be the coordinator, if not of the division at least of that meeting. Also, there was a physical therapist with a student extern, a speech therapist, a hearing teacher, and an educational audiologist. I handed them the results of The Boy's audiogram, and that qualified him for hearing services. Much of the meeting was spent on that.

I told them to evaluate him for speech, even though it hadn't been too long since his last evaluation, in light of the latest hearing test results. He was also evaluated for gross motor skills because he currently receives physical therapy services.

My mother wanted me to have them give him what amounted to an IQ test. The Wechsler test (WISC) is what she had in mind. I asked them about it, and they said that they didn't see a need. She said that the next time she sees this group of evaluators, she will ask them herself, because she thinks that there needs to be some sort of baseline for where he is performing. If he'll cooperate, it probably couldn't hurt.

In the area of gross motor skills, the evaluator said that The Boy seems to be at or close to the level where he should be and would not qualify for physical therapy through the school district. It is likely that we'd discontinue the therapy that he is getting soon, even though he does love to go, because there is less of a need for it. The evaluator said that as long as he continues to be active, and perhaps spends some time practicing the tricycle, which he really doesn't like, he'll be fine.

The Boy also did not qualify for services in the area of speech. The evaluator said that there were a few typical consonant substitutions (you know...saying W sounds for R) and a few that he didn't get right but would fix upon correction. She said that his speech is great and sounds typical. She said that it helped that his hearing damage didn't even start to occur until after his language had already developed, at least in terms of what he had heard.

The hearing teacher also did some work with him, trying to figure out how well he could locate sound and how he was hearing certain sounds. Interestingly enough, she was able to figure out that some consonant sounds did give him trouble. She had that LeapFrog Fridge Letters, with which he was familiar. She asked him "what does B say?" and he said "buh." And asked a few others...and then asked "What does S say?" to which he responded "I want another one." As in, he had trouble with S, a high-frequency sound, so he didn't want to say what it said. Interesting.

The evaluators were impressed with The Boy's intelligence. They were thrilled to see that he knew all his letters and numbers and could count with one-to-one correspondence. They were interested to hear that he had both the patience and the ability to put together puzzles that had many pieces. They said that he seemed very smart.

I told them that with his birthday being August 30, two days before the cut-off, that we wanted to wait the extra year to send him to kindergarten and not push him to go to school and be the youngest in his class. Not that he won't have social issues anyway, but I'm not concerned about him getting to the academic material in school a little later, nor am I concerned about him being "bored" in preschool because he needs the time with friends, and the school where he'll be going emphasizes that over the "academic" stuff, which he does on his own anyway. I'd much rather that, while he is in preschool, he spend the time just learning how to function in a group, and he can get all the letters and numbers and reading and writing from us at home, because that's what he likes to do in his spare time.

But as for hearing services, The Boy would receive visits, at preschool, from both the educational audiologist and the hearing teacher. The audiologist is there to check his hearing aids every so often and see that they are on properly and working. She is also going to arrange for a transmitter so that during teacher-directed activities, the teacher can wear a transmitter that will carry speech directly into The Boy's hearing aids. The hearing teacher will work with The Boy on understanding people more effectively, reminding how to look at people when he is listening to them (for lip-reading, too), and advocating for himself when he wants something to be clarified. It sounds pretty complicated to teach all of that to a 3-year-old, but...that's kinda her job, so hopefully she knows how to do it.

We will be having The Boy's very first IEP meeting on Wednesday, December 22nd. Unfortunately, Grandma will be away, but she will certainly look over the IEP and make additional recommendations, because that's what she does.

I was very impressed with The Boy over the past few days. His willingness to cooperate in clinical and evaluative settings has not diminished as he gets further and further removed from the constant stream of medical personnel that is cancer treatment life. He listened to me, he followed me to registration desks and offices and even to the bathroom whenever it was time to go. He likes the fact that the hospital has little tiny Boy-sized toilets.

I worried a bit about these appointments as his willingness to cooperate at home has been close to non-existent. He has wanted to be upstairs when I'm downstairs and vice versa. He has made messes and refused to help clean up. He had 4 toileting accidents today (one of which happened in the hospital cafeteria while I had the nerve to talk to someone else), which is a lot even for him. We'd been holding steady at 1 or so a day with the occasional accident-free day, so this is definitely a big step back. I'm just hoping that what friends who taught preschool tell me is true, that once he gets to school and sees that the other kids don't have accidents all the time and go to the bathroom when it's time to go, he'll get with the program. Or, Meatball will potty-train first and then The Boy will REALLY feel the pressure.

I do wonder exactly what it is that The Boy is hearing now and how he'll respond to having things improved for him in that area. It may be overwhelming. But he may enjoy the fact that the songs he hears have real words that he can understand.

I'm glad that we have everything started with this whole process and hope to see some positive results.