Wednesday, September 30, 2009
Monday, September 28, 2009
The last two work days (Friday and Monday) were inservice days at my school and were insane!! We took the kids to a big park on Friday and it was 3 staff and 30 kids so we split them into 3 groups of 10 and we each took one group. I must say they listened pretty well for kids. I was impressed with them. I had all ages, from 6 to 9 in my group and they paid attention pretty well, and only goofed off a little bit. The day was long and full of activity though so it ended with me feeling quite tired, but tired in a satisfied way not stressed out so it was good.
Today (Monday) was less of a satisfying tired and more of an "omg I feel like a walking zombie" kind of tiring day. We were cooped up in the school all day with 32 kids, but our usual room is used by other people during the day so we spent the whole day in the art room which is about half the size of our usual room, and the kids were bored because there wasn't much to do in there. We were overall rather unorganized and understaffed as our supervisor has a severe sinus infection and was in the ER last night. So she stopped in this morning and dropped off some foam to do crafts with and then ducked out as quickly as she'd arrived. The kids had meetings all day and we had to take them to the meetings in groups. And when one staff member was taking them to their meetings the other watched the rest of the kids, and since we were short staffed that meant I ended up with a lot of kids all by myself for most of the day.
Tomorrow our usual kindergarten teacher isn't in, and I offered to take over for her for the day.. I'm not sure if I know what I've gotten myself into. Heh. I already have some idea of what I plan to do for the day. I've dug out a poem about Fall, and collected some leaves that have fallen from the trees, I'm hoping for craft I can get them to trace their arm and hand on some brown construction paper, and make a puffy tree top looking piece out of some red/orange/yellow paper and make a tree using the hand as trunk & branches, and then glue on some of the leaves from outside. Or if they don't want to do that they can just get some white paper and a crayon and do some rubbings of the leaves. Wish me luck.
After work on Friday we went and got Skyler's prescription filled by optician friend, (it's gonna take two weeks or so to get it back from Toronto though) and then headed to her parent's farm so Chuck could do some work on the car or something. Anyway, her parents have a lot of animals, and me being a city girl am very easily excited. So I leave you with a picture of me and Skyler with a real live llama, and a picture of a random goat, and Skyler eating a cookie in the car while we hide from the mosquitos.
Thursday, September 24, 2009
Haha apparently he's good with wearing them now! Wants to be just like mommy. Oh and did I mention that his opthalmologist today also wanted to take a picture when daddy put Skyler in the big opthalmology chair and he sat there on his own. He laughed and said that that was just way too cute and would it be alright if he took a picture. We said of course, our baby is the cutest thing ever, even his doctors think so. haha.
He checked out the strabismus (and luckily our opthalmologist is also a specialist in strabismus) and wrote him up a prescription for glasses to correct it. The hope is that he will begin to use both eyes equally instead of just his left. Because his left eye is stronger than the other, and that's why he reaches for things more with his left hand as well, and looks to the left more. I had suspected as much and has mentioned it to the OT as well, so I'm glad the doctor sorted it out for us. It's fortunate that we've caught it so early and have lots of time to correct the problem. The glasses won't help his vision at all, but are just to straighten his eyes out so he doesn't have one turning inward. We're going back in four months, and if the glasses don't work then it's "Arr matey's ye be walkin th' plank!" for my boy. Which is my fancy way of saying he'll need an eye patch. I'm thinking I'd get him a nice shoulder parrot to go with it.. (haha).
We asked him about getting frames for a baby (cost and availability and the like) and he said his secretary could recommend a place for us, then he said "hold up, I actually have some sample frames.." and pulled out some blue plastic unbreakable baby frames. Which he gave us for free. Did I mention how much I love him?? I talked to our friend who is an optician and she confirmed baby frames are about $250 or so, and there aren't many styles available because baby glasses is not a huge market. So yay for free frames from the opthalmologist. Now we just have to get our optician friend to fill the prescription tomorrow when she's at work. Apparently it takes about two weeks because they have to be sent to Toronto. Oh well, I don't think Skyler will mind. He's not exactly thrilled about the idea of wearing glasses.
Monday, September 21, 2009
Now little D is not known to have any special needs, but our supervisor has wanted us to keep an eye on him for the last few weeks. He has been exhibiting some possible signs of autism. He likes to flap his hands a lot when he is excited. He tends to just stare off into space quite often and it takes him a moment or so to come back to reality when spoken to. Watching him for a while in the classroom the other day I observed him standing alone in the quiet time area, spinning in circles with his head angled toward the ceiling, tilted to the side and his eyes closed. He is by no means a developmentally slow child, he can spell just about any word you can ask, even words you wouldn't think a 5 year old could spell. But he doesn't tend to engage in play with other children, unless you lead him to another child and suggest an activity for them. Then he will engage, and interact with the other child. He loves tractors and trucks and will play with them, alone when left to his own devices.
This morning we were in the big room, we had the kinders to grade 4s all together, as we do for an hour each morning before taking the kinders to their own room. And D didn't know what to do with himself, so he was sitting at a table, alone, and he just zoned out. For a good fifteen minutes he sat there staring at nothing, and occassionally he would put his head down on his arm and just sit there like that. Until finally little A's inclusion worker (who is in charge of the large group of kinders until A arrives in the afternoon) went up to him and suggested he go play with the other children. He wandered around for a few moments, walking up to the other kids and sitting with them, asking them if he could play. He came to me a few minutes later, tears streaming down his face saying that none of the other children wanted to play with him.
There was another kinder standing by the games who looked rather lost as well with nothing to do, so I suggested they both sit down and play a game together, and I basically gave D a hug and sat them both down and gave them something to do and they were happy. So then the same coworker who does the kinders in the morning and inclusion in the afternoon said that I wasn't supposed to do that. We were supposed to be observing him to see if he would engage in play with others on his own, and apparently he has been unable to find others to play with and ends up crying until someone helps him. So I was supposed to leave him cry because our supervisor wants us to observe his behaviour. I suppose not being able to engage others in play is another sign of autism. But I don't really understand it. She has already decided that she is going to talk to his mother and ask if she has noticed certain behaviours (that he exhibits at daycare) at home.
Anyway back to my point, I was kind of upset at this suggestion. The child is brand new to the school, he doesn't know anyone but the other kindergarten kids. We had over 30 kids in the room at the time, and only 4 kinders, who were spread all over the place. Whether he has autism or not, I would expect him to be shy and feel scared and sad when told to go play with the other kids. Almost all of whom have their own little cliques and are doing their own things. And he did make an effort, he went over and tried to play with the other kids. They weren't very welcoming. And even more so if he has autism I said to inclusion worker/kinderteacher girl "Well if A has autism and your job as an inclusion worker is to help him be included and play with the other children, and they are suggesting that D has autism then why am I supposed to let him stand in the middle of the room alone, crying because no one will play with him? If he has autism won't he be entitled to an inclusion worker whose job it is to make sure he is included?"
She gave me some lame response about them needing to see if he fit the behaviour or whatever that autistic kids have with not being able to engage in group play. I responded by telling her that I didn't feel right letting him stand there crying. Here is what I don't understand. We have all seen his behaviours and can agree on the things he does, the rocking, the flapping, spinning, spacing out, etc. But we are not doctors, nor is anyone I work with qualified to make a diagnosis, and they know this as well. All we can do is point it out to his mom, and suggest she get him seen by someone who is qualified to figure out what those behaviours mean, and then we can give him whatever help he may need. So why are we intent on letting him suffer and feel left out and scared and sad just so we can observe a specific behaviour?
Now let me add that I'm not sure what exactly my supervisor's stance is on this, she wasn't there this morning when it happened, I'm only going with what inclusion worker girl told me, that we weren't supposed to intervene. I honestly don't think my supervisor is that cruel and maybe the girl just misunderstood her. One more thing should be noted about inclusion worker girl, she didn't know she was going to be an inclusion worker when she was hired. She has no special training or skills, and is actually hoping to do a different job, one she's more confident in. I don't think she is a bad person either, she just lacks training for what she's doing.
So please weigh in on this. Tell me, what do you think? Should I have let him stand there and cry? Or did I do the right thing by helping him be included? (I should specify that the kid I sat him down with was more than happy to play with him too, he had been standing around looking bored.)
Thursday, September 17, 2009
I don't want people to point to my son and say to others "that child is disabled." I want people to point to my son and say "that child is Skyler." and if they feel the need to add that is blind then so be it. But, say that he is visually impaired, say that he is blind. These things are true. But do not call my child disabled. In fact what I want above all else is for people not to point at my child at all, but to call his name and say "Skyler come here! I want you to meet ________" that would be the best I could hope for. Unfortunately I am aware that reality is not always the same as what we want for our children. I am hoping that throughout my son's life I will be able to teach him and others around him not to judge him by the label of disabled. I want them to know that yes he is blind, but he is first and foremost a person! He is not someone to be pitied or "helped" (unless he asks for help) just because people don't understand and see him as helpless or pitiable.
I know though that he is "classified" as disabled by our goverment. That classification is what allows him to have special services, access to the CNIB, extra money to pay for the visual aids he will need when he goes to school, the right to have an assistant at school, etc while I am grateful for the assistance they provide I do not agree with the label they have given him in order to justify providing it. And while I agree he is different than most of the kids he will likely go to school with, I don't think that makes him any less able than the rest of them. I think he should be the one to find out just how abled he is.
Monday, September 14, 2009
Every once in a while I am reminded that Skyler will one day grow up, he will be a child, a teenager, an adult etc. Today I was reading a blog post about someone else's child playing soccer for the first time and the thought occurred to me "can blind kids play soccer?" I mean it feels like a stupid question and it probably is, but I can't seem to figure it out. I imagine if you can't see where the ball is you can't exactly kick it or score a goal. Maybe if they have a ball that makes a sound or something? And goals that make sounds? That might work. Do they have those things? Do blind kids generally play sports? Not that I care, I myself don't like sports in the slightest. Nor does C, so it isn't like we're disappointed about it. We didn't have dreams of being Hockey Parents or anything. (Not that I would ever be like that with my child, Canadians you know what I mean when I say Hockey Parents. Blah.)
But it leads me to several other questions. I mean I know blind people can't drive. That's a matter of safety (and on a side note, I think it's completely ridiculous that we don't do retesting for drivers every decade or so. I know many elderly people who've lost their vision but still have their license because we don't retest people. These people shouldn't be on the road!). What about skating in the winter? Not hockey but just skating? Maybe if they hold hands with someone who is sighted so they don't bump into people? Don't get me wrong, I know there are so many things he can do. And I have no intention of limiting him in any way, unless of course it compromises his safety. Like I'm not going to let him drive because that would be stupid.
But I wonder about these things. I guess I just know there are some things he won't be able to do. Which is true of anyone. I mean there are things I just can't do. Not because my vision sucks or because I'm disabled in some way, but just because I can't do them. I suck at sports, and I have no skills when it comes to drawing. My "people" look more like disfigured blobs when I try to sketch. Everyone has things they are good at and things they are not, but I suppose I am just worried about him being limited because of his vision. What if he wants to play soccer or something? I always thought I would be a paranoid mommy if my son wanted to play some sort of sport but throw in the fact that he's blind and I think I would spend the entire time having a panic attack on the side lines worrying about him getting hit in the head or tripping over someone and breaking a bone.
Thinking of which has just alerted me to the fact that soccer is a team sport and there would be other kids on the field too. Which would be pretty hazardous as well if there's lots of noise and you can't tell who is where. He'd probably run into them. I guess sports are pretty much off the table for him. Here's hoping he's like both of his parents and has no interest whatsoever in playing sports of any kind. Maybe I'll find him something safer to do like swimming. Get him a nice little life jacket and some lessons. Or a piano. Maybe he'll love music like his mommy.
Wow I am so overthinking this. I know the time will come when I have to deal with it though. I like to think things out ahead of time.. I suppose I will just have to deal with it when the time comes. I just hate those moments that give you pause, and not in a good way.
Sunday, September 13, 2009
Technically I helped him a little in the last picture there to stand up completely.. But still I think it's time to lower the crib. I'm sure he's going to figure out how to get all the way up on his own very very soon.
Saturday, September 12, 2009
So 4 hours later we see the doc who says, yeah he probably got a little bit into his lungs but it should be absorbed, he's going to cough for a while, but otherwise he'll be fine. He was glad I brought him in just to be sure, he said better to be a bit paranoid and worried than to leave it and have something horrible happen. It still sucked though. So to make a long story short we spent from 9pm until midnight sitting in a room full of sick, screaming kids and people with masks on due to the H1N1 thing. My baby didn't get any sleep and didn't want to sleep when we got home at 1am either. And I felt like the world's worst mom. What a lovely way to spend a Friday night. Not.
Friday, September 11, 2009
His CNIB OT came today. I almost forgot we had an appointment with her. It's a good thing she called first because C and I had passed out in the living room and the baby was taking a nap too. We all woke up though and had a great visit as usual. I can't stress enough how much I love her. Of all the members of Skyler's "medical team" she is probably my favourite. Though I really did like his Neurologist the one time we met him. The Neuro also mentioned (and I forgot to say this before) that he had gotten ahold of Skyler's MRI and had taken a look at it, and he actually has his anterior pituitary! But it's very underdeveloped. It's super small in other words. We'll know more when we eventually send him in for another MRI though I want to wait a while to do that.
I also didn't talk about Skyler's follow-up clinic, which he attended with his daddy and his CNIB OT, I wasn't able to go because of work, so anything I have to say about it is second hand info. When she came today her and C talked about how the clinic went and that the doctors were impressed with Skyler, especially his ability to sit up on his own and his muscle tone and how he uses visual cues. Apparently they put him on the waiting list for a speech therapist, just in case he develops problems later on with his speech. The waiting list is about a year long so I guess it's best to get on it now even though it seems to be progressing normally at the moment.
I have so much floating around in my head at the moment that I can't put it all into words so I'm going to leave it at that, and maybe once C gets home from work I'll be able to unwind and finally get some sleep. There's a storm coming in, and I think I'm feeding off its energy. Must be the metal arm, like a lightning rod. Okay, now I know I'm tired, I've entered rambling territory.
If you haven't read the post before this one, go check out the pictures at the bottom of it. They are adorable. (When isn't my baby adorable? haha)
Thursday, September 10, 2009
This morning I spent an hour and a half playing games with a group of kinders & grade ones. We played Cranium and Connect 4, then at 8:30 we took the kinders to the kinder-daycare room and I had them introduce themselves and listen to O Canada over the P.A. when the school announcements came on. And then it was time for me to go. Now I have 6 hours to kill before I go back this afternoon. It goes by so fast when you only work a couple hours at a time, especially when you're playing games.
The kids are so unbelievably cute. There is one in grade one whose backpack is the same size as her. She's so tiny! I don't know how she lifts that thing. I can't imagine my little guy being that big some day, and doing half the things these little ones do. Boggles the mind. Also 50 kids in one room is insane. Fun, and insane. And this isn't even our whole group. We have a total of 75, with 42 on a waiting list. They aren't all there at the same time though. Some kids are only mornings, some are only afternoon. Some are only Mon, Wed, Fri. Etc. You get the idea. Anyway it's great. I can't wait to go back this afternoon.
Oh and Skyler was very well behaved for his babysitter, or so I heard anyway haha. Not so sure how he will do this afternoon though since he woke me up at 3am this morning and we've both been awake since then. We're all having a bit of trouble getting used to the new schedule. We haven't had to wake up so early in many months. He was cranky for his daddy this morning. Hopefully he won't be cranky this afternoon. Fingers crossed. I managed to get him to nap just a few minutes ago. I think I'm about ready for one myself. But first..
Tuesday, September 8, 2009
I forgot to mention what we learned from the neurologist a while back. During our discussion with him, he told us that he's been studying SOD and there is new evidence to suggest that it may be genetic. He said, however that it's a small chance, maybe about 10 percent, that the next child will have it as well. We'll obviously learn more when we meet with the geneticist, but it will be a while before then. The neurologist asked us if we planned to have more kids and we both answered with an emphatic yes. Even if we have another one with SOD, we already know the ins and outs, and are hooked up with CNIB and all the specialists we'd need. I imagine it wouldn't be hard to get our next child in to see any of them with the family history.
I know there are lots of people with special needs kids who don't want to risk having another one. Not to say they don't love their child, or treasure them. I think it all depends on what the child has. Honestly if Skyler had a life threatening/terminal genetic illness I'm not sure how I'd feel about trying again. I would probably want to very badly, but I'm not sure I could go through with it, knowing the risks. I'd probably want to consider donor gametes or adoption/foster parenting if that were the case. Because SOD can be managed with hormone replacement therapy, and I don't think blindness is as crippling or life destroying as most people seem to see it, I have no problem with having another one with the same issues. At least we would be prepared to deal with it.
But don't get me started on being pregnant again. There's something I'm scared of. Not the pregnancy itself. I loved being pregnant with Skyler, but the trying to get pregnant, the worrying while pregnant, all of that.. Not looking forward to that part.
So when people pose the question "Are you sure you want to have another? What if the next one is like him?" I know my response will be "Well I am hoping for a girl, but if we have another boy I certainly won't love him any less."
Monday, September 7, 2009
(Don't mind our painting clothes. We were prepared to get messy! :)
Saturday, September 5, 2009
(P.S. the kid with the fish is my brother, in case you were wondering.)
Thursday, September 3, 2009
Wednesday, September 2, 2009
At lunch break I wandered around with some other girls from my centre (who I'll be working with) and we got to know each other. It was nice, then we walked out to the parking lot so one of them could put away her water bottle (we each got a free water bottle with the Y logo) and she showed us her car. The other girl pointed out hers too, so I mentioned my husband had ours. Then the other girl pipes up "How is Chuck anyway?" I'm pretty sure I did a double take. Turns out she worked with him before she got this job. I always joke that Chuck knows everyone in the city. I knew the girl looked familiar but I couldn't place her face until she mentioned it. It was pretty funny.
The lunch was catered for the training and it was awesome, pretty much made up for the eight hours of boring training stuff. That and my supervisor being hilarious. Afterward my supervisor's supervisor (the one who hired me) asked me to see her. She offered me a job at another centre with more hours.. She emailed me the hours last night and I had to decline. It was the weirdest shift I'd ever seen. 3 blocks of 2 hours with 2 hour breaks in between each. I looked at it and thought "wow how useless. I can't even bus home and back in those 2 hours, I'm stuck out in the middle of nowhere" I'm much better off with the crazy break between 9 and 3:30, at least I can go home and see my son and play with him and make it to his appointments. Plus I already got to know the staff at the centre I'm at.
All in all yesterday was good, Skyler missed me so much, I haven't really been away from him for 8 hours all at once before. He wouldn't sleep for his daddy. But when I got home ohhh boy I got the best smiles and laughs out of him, and HUGE baby hugs. It felt so so good.
On the weekend we went for a picnic with Chuck's cousin and her baby H. H is only 4 months old but is the same size as Skyler. Apparently my baby is extremely anti-social. I thought him crying when the 10 month old in our baby group kissed him was pretty much an isolated incident. Turns out it was not. Haha. It was hilarious watching him and H interact. As soon as baby H looked at Skyler or made a noise, Skyler's little pouty lip would come out and he would start crying! We actually held them up so they were both standing looking at each other, and my baby did something I'd never seen him do before. He started walking. Backwards! He literally backed away from H and turned and leapt into my arms. So cute and funny. He's going to have to learn to socialize!