Picture Update!

Just stopping by to give you a quick peek at my sweet little boy who is now the owner of about 10 preschool/kindergarten workbooks. Haha poor kid can't even hold a crayon yet and he's already got enough learning materials for the next four years. Also tonight he did the cutest thing! We went to dinner and daddy had a salad with some flat bread triangles in it. He gave Skyler a triangle. He chewed happily on his flatbread triangle, and then when he decided he was done with it, he leaned in toward the table, and placed it back in the bowl with the others. He fished around, pulled one out, stuck it in his mouth and placed it back in the bowl. Daddy took some pieces out of the bowl and put them on a tray. Skyler picked them up, both in one hand, and put them into the bowl. It was so cute! He's begun sorting things. I'm so excited. I love when he shows off new skills. Anyway now a picture of my beautiful little boy enjoying some pasta and cheese before bed. (Also notice he's using his right eye to focus instead of the left ;)

Right to Read

Those of you who have been following me for a while know that I like to be prepared for things, even when they are a long way off in the future. This time it's about his schooling again. We went to the mall the other day and I picked up some preschool learning workbooks for Skyler. Nothing too fancy, just basically colouring pages with the alphabet and numerals, with questions on the pages like "How many apples are there in the picture? Colour the apples." Except they probably spelled colour without the U because I'm guessing it's American. Anyway it took me a long time to find a book that had letters and pictures and numbers that were big enough. It was frustrating. I want him to be able to see the print on the pages because otherwise they are useless. I couldn't even find any flash cards with big letters. They were all too small. I'm considering making my own.

I know we can (and will if we need to) blow the pages up with our scanner and make the images bigger for him, but I'd rather not have to. I am wondering why they don't have things like this that are more accessible for disabled kids. I'm sure I could find some specifically tailored to low vision children online, but I don't think it's fair that I would have to order something that other people can just pick up at a regular department store. Do they think that disabled kids don't want or need to learn? Or maybe the market just isn't there. Whatever the reason it's frustrating.

Yesterday we went to the CNIB for Skyler's little "photo shoot". Our OT chose us to give a free Victor Reader to, along with two other kids. (It's like a cd player for talking books, but for blind/visually impaired people) So the company who donated them wanted to get pictures of the children receiving them. They took a few pictures of him with me, and a few of him sitting with the other kids. He was a bit cranky, but not too bad. Afterwards we snuck into the CNIB shop and ordered a Braille labeler. It'll probably take a month to get here from Toronto, but we're so excited. We're going to be able to label all of Skyler's stuff, and do some Braille for the books we own that don't have Braille.

Which reminds me! Please please, if you live in Canada, take a few minutes to click over here and sign the CNIB Right to Read petition. It takes two minutes, costs you nothing and may save the CNIB library, giving lots of people, including my child the opportunity to read.

Right now I'm trying to fight off an awful cold, which has stolen my voice. Have you ever tried to take care of a room full of kids, with no voice whatsoever? It's not the easiest task, when they don't listen much to begin with and you can't do more than a whisper. Oh well, I will get through it, tomorrow is an inservice day and we're taking the kids swimming, hopefully my voice will have returned by then.

I hope you all are well.

He'll Take The World By Storm

Sorry for taking so long to update, life soldiers on at it's unwavering pace doesn't it? Thursday was good, although the wait for the opthalmologist was 2 and a half hours, for a quick five minute visit. It was worth it though, Dr. Awesome says Skyler doesn't need his glasses anymore, he is glad that Sky seems to be using his eyes equally even though not at the same time, and that patching is unnecessary at this point. We'll go back in four months and see if he needs patching then, because so far the left eye still seems to be a bit stronger.

After his opthalmologist appointment we headed home, Sky took a quick nap and then his OT came over. We had lots of fun, she hadn't seen him in almost a month and a half because of the holidays and all that. So he had lots of new tricks to show her. Such as just how curious he is about the world. My baby is not one who can be dissuaded from something easily. If his goal is to crawl/furniture cruise through the entire apartment you had best not get in his way! Honestly sometimes I worry about his attitude, but then I remind myself that when he gets older, his determination and independence is going to serve him well. He's going to know what he wants, and he won't let anything stand in the way of getting it. And that is extremely important when one is blind. I would rather he go out there and get the world, than stand around and wait for someone to bring it to him.

His OT also told me about a workshop on Feb 19th. Chuck and I are going to take the day off and take the workshop together. It's about blindness and inclusion, and about fostering independent living skills. I'm excited, I'm almost finished my workshop about dealing with challenging behaviours and I've just started my course through the college. Learning, learning and more learning, you can't really go wrong.

On Friday we had friends over for dinner, they have a daughter who is 4 and a son who is one month younger than Skyler, but more than double his size. I was surprised at how well Skyler played with them, he used to cry and get freaked out by other babies, but he was very calm. He listened, and when he could see them he looked. He had his "concentration face" on most of the night (you know the one where his eyebrows are furrowed and he's trying to figure out what on earth is going on). It was a good time.

There's a huge winter storm outside right now, it's been here all weekend and is expected to last into tomorrow. I am just hoping it is gone by Tuesday because that's my birthday :). Though some of you may have guessed, and I'm not sure if I mentioned it before, but I am turning 23. In June, Chuck will be 24. I actually find it kind of funny, in the workshop that I'm taking right now the woman running it listed a bunch of things that predispose a child to being at risk, and having young parents is one of them. I know we're young, but honestly (and I'm not trying to be an egotist here but,) I think we've done a pretty good job so far with what we've been given. I don't think age really matters, to me it's sort of just a number. It's more about your maturity level, where your head and your heart are at.

Some people just aren't ready to become parents at 21, but I was. And here I am. And while it hasn't always been easy, I don't have a single regret about it. I would do it all again in a heartbeat.

My Toddler

Someone has decided he is no longer a baby. He is drinking successfully from his sippy cup without a care in the world, and he has begun to sign for "milk" and "more". All of this, just today! He is crawling around the apartment, pulling to stand and then cruising the furniture with reckless abandon. He is babbling uncontrollably. He is an amazing little boy. I think he is about to make that scary cross over from baby to toddler. He even has TWO teeth, they are just peeking through, but they are there.

We got his disability cheque today, and it was a lovely surprise. I have the next four days off work and I couldn't be more excited, even though I am coming down with a cold. Tomorrow morning is Sky's opthalmology appointment, and then his CNIB OT in the afternoon. I can't wait to see what we can find out. And I am so excited to spend some time at home with my little one. I hope you all are well!

I Can Feel Your Eyes On Me

I was reading another special needs parent's blog today and they were talking about their child being stared at, which is something that makes us special needs parents pretty upset for the most part. No one wants other people staring at and judging their child for their differences. At the same time though it reminded me of a funny story about my son and a lady at church.

I love our church, the people are so friendly and nice, the sermons are wonderful. We haven't been that many times yet, we're new to this whole church going thing. So there are people who like to stop and talk to us, and gawk at Skyler. Well this one lady, kind of older, very nice stopped and was saying how cute Skyler was. Well she started in on the crossed eyes thing. "Oh it's so cute how his eyes are crossed, isn't it funny how babies do that? My granddaughter's eyes were crossed for a while when she was a baby too. It's just so funny how they do that." Etc. We smiled politely and nodded, but she kept going on about how funny it was and how all babies do it until they outgrow it. So I finally just said "Actually he's legally blind." And I wasn't being mean or rude, I was just growing weary of the conversation and I am usually pretty good about telling people why his eyes are that way when they make those kinds of comments.

Her reaction was (thankfully) not one of pity in the slightest, nor did she tell me that if we just loved God enough he'd fix them, (that one gets me too) no she was polite and kind, but I think a little caught off guard and confused, because she asked me if that meant we were going to teach him sign language. I said yes actually we do try to do some baby signs with him.. I didn't quite know how to respond to that one. She was a nice lady, and I don't mean any disrespect to her, I just kind of got a laugh out of that one later on. I mean yes, I am teaching him signs, but not because he is blind. I think she got confused and couldn't remember the difference between Braille and ASL. I felt kind of bad for catching her offguard like that, but I don't feel like I should keep it a secret when people talk about his eyes being "funny".

I think Skyler is one of the luckier ones with disabilities. Because while it is somewhat visible (the strabismus) it's not glaringly obvious. Most children we see at the CNIB events who have some vision move around very well, even though they may go a bit slow at times to make sure they are not going to walk into anything, they are pretty hard to distinguish from the children who aren't blind/visually impaired. I'm hopeful that he won't encounter too much staring from people when he is older. More importantly I want to give him the confidence and ability to answer those stares, either with something witty or with information. I don't want him to feel like a freak or a weirdo because people can see that he is different. I want him to know it's part of who he is and that he has every right to embrace who he is and help others to see him as a whole person with a great personality not just someone with a visual impairment who needs the pity of others.

Granted though that he likely won't even know when most people are staring at him unless they are right in his face. Which I honestly hope never happens... Except with young children. Have you ever had a young child come right up to your face and look at you, and then ask you something about yourself? Some people might find it offensive, not me I find it a wonderful opportunity to teach the child something. I love to point out to my kindergarteners the differences between people and how they make us all who we are. Also the fact that they are looking closely and examining things, and asking questions means they are curious about their world, how they fit into it, and want to learn more about the things they don't understand.

Anyway the point I was trying to make is that a lot of people with the more visible disabilities get stares, and whispers and sometimes pointed fingers. I'm not sure how I would handle those except maybe to say "Stare stare booger bear, take a picture I don't care." while somewhat childish it makes the perfect point that the person who is staring is engaging in a childish behaviour. Children have a reason to stare, they don't know better, they are curious and want to know why that person is in a wheelchair, "Are they alright? Is s/he like me? Does that person go to school, how do they do certain things?" Honestly adults should know most of the answers to these questions or have the guts to ask the person instead of doing something that they know is rude, like staring or pointing and whispering.

The Compassion of 5 Year Olds

Today I had a wonderful morning at work. The kid who has the parvovirus is at home today so I only had 6 kids, they were quiet, calm, respectful of each other. They shared so well! I was in awe of them. This group of kids is normally a crazy bunch. They like to scream and yell and run and argue. Not today. The girls loved the tutu, (I only had two girls as the other was at home and the two I had were the twins) they shared it with each other without a single argument. One of them helped me to make the second tutu. AND the most amazing part of my day was circle time. Normally each morning I have to sit the kids down and force them to listen to me blab on about some stupid topic. This week it's snow people. (The topics are chosen by my supervisor) The supervisor isn't in today so I let my kids relax. I gathered them on the carpet and we all sat together.

I let them start their own discussion. Guess what they decided to talk about? The earthquake in Haiti. I should remind you my kids are only 5 years old. One of my kids told me it was a very scary thing that happened in a far away place, and that lots of people got hurt really bad, and some even got lost. Another said that an earthquake is when two plates under the earth shift into each other. One of them said his daddy is sending money so that the people can have food to eat. I was almost ready to cry! (Of course I told him that was a very very good thing to do). It was amazing watching them interact, they were very serious about the topic, they took turns speaking, they listened to each other, and they asked me intelligent questions. They all stayed on the same topic and they were all very concerned about the people in Haiti, and what happens when there's an earthquake. I wish I could let them do their own discussion everyday.

After lunch we had to send home a second kid with parvovirus. I wonder if I am going to be extremely lonely on Monday.


And now for something adorable, my monster in his fancy clothes, and about to throw one of his famous little fits:

Parvovirus, So Fun!

Chuck has fifth's disease. We learned this after one of my kinders came to school with a small rash on her cheeks that mom said was caused by eating oranges. By lunch time the small rash had spread all over her cheeks and her arms and her stomach. Not from eating oranges. It is patterned almost like lace. Fifths (or parvovirus) is extremely contagious and the rash doesn't show up until it's past the spreading stage. So pretty much every child she has come into contact with (which would be just about the entire daycare centre plus the school age kids) and the staff are likely to have it or catch it as well. Except those who have already had it, since they are immune. The reason I know Chuck has it is because last night he started freaking out about his legs being itchy and burning. He pulled up his pant legs and we looked and he was covered in a red (lace-y looking) rash. We both thought he must be allergic to something, but then I saw the same rash on my kinder's face today and the teachers and everyone said it must be fifth's. I looked it up at mayoclinic.com and yep it's what she has.

Aside from that things are well. Work is hectic as usual and the days are long, but I am plugging away, striving for the light at the end of the tunnel. Skyler is growing in leaps and bounds. He wants to walk, and he throws crazy fits if you don't indulge him in this for as long as he pleases. For a one year old he's pretty good at showing just how pissed off he is when he doesn't get his way. I wager he comes by that honestly though, his daddy is one of those people who tends to get cranky too when things don't go the way he'd like. And me I'm just impatient, when I want something I want it immediately. Poor kid, he's going to have a tough time learning some self control I think.

Anyway I am off to put my crafting skills to good use finally and make some tutus for my daycare centre. I figure the kids (the girls at least) will enjoy some new dress up clothes. Especially since I plan to make one tonight and then bring the materials in tomorrow for them to help me make the other two. Wish me luck.

Looking Up

I can't wait for June, I just keep telling myself 5 and a half more months! Haha. Tonight I have a workshop called "Dealing with Challenging Behaviours" I'm actually excited to go to it. I love learning new things, and hopefully it will be helpful for work and home. The workshop is three nights, one tonight, one next week and one the week after that. Luckily it's at the Y right by my place too. My supervisor said I can leave work an hour early today and tomorrow (and still get paid) so that the two hours I spend at the workshop tonight (unpaid) are made up for. So I'm pretty excited about that.

I also booked Jan 21st off of work entirely, I can't wait until then. Sky has his opthalmology appointment, which I am both excited and worried about. He only wore his glasses for about 2 months out of the 4, but I honestly think he's using both eyes now more than ever before, in fact he is using his right one more than his left now (not too much more mind you) which is why it's probably a good thing he stopped wearing the glasses, because now his left eye is getting less use. I'm a bit worried though because like I mentioned a few posts back, Mr. Cutiepants is seeing a lot more. The only reason this is troubling is that he will likely be reclassified as Visually Impaired (though I believe his opthalmologist said we will wait until he is 3 to reassess his vision) and the problem with that is that the government will take away his disability tax grant. Meaning he won't have the money he needs to get supports like a Brailler, Large Print texts, etc. etc. Which he will still need.

So I'm thinking it's going to be one of those "great news, slightly bad news" situations. I'm so happy that his vision is improving and he seems to be seeing a lot more than we thought he ever would. On the other hand I am saddened that he may lose his benefits and supports that he will need once he starts learning. Also the school system will grant us less supports as well if he is visually impaired instead of legally blind. Which is fine by me since I have no intention of sending him to a public school until he is old enough to take care of himself and insist that his educational needs be met. Of course I will be standing behind him when he needs me, supporting him every step of the way. Still, the classification is such a stupid thing, I don't like how he suddenly doesn't qualify for support just because he can see a foot or two further than we thought.

After the opthalmologist appointment (which takes hours) we will be heading back home for his appointment with the CNIB. We scheduled it that way on purpose so that we can relay the information from the opthalmologist to his OT. I am of course looking forward to that as we love his OT. She's a ray of sunshine, and her visits are always much anticipated around here. I'm hoping we will have lots of positive news to tell her.

I swear my kid is getting bigger, I took a look at him today and he just looks huge compared to a few months ago. I mean this probably sounds stupid to people who have normal kids, but for someone whose baby was 14 pounds for like 4 months (maybe longer) and didn't grow at all, it's kind of amazing that he seems bigger. I am always in awe of him. Anyway I hope you all are well. And Corrie I never thought of that, maybe "blarg" is a Canadian word? I always just thought it was a funny way to express annoyance. Oh and CLC I love your idea that they think bathtime is just like the womb! And to the rest of you, thank you for saying how cute Sky is, I love everyone's comments.

Random Quick Update

Sweet I have spammers! Though I suppose I shouldn`t be so excited since spammers are basically the online equivalent of having head lice. Anyway I just had to share the news that last night Skyler`s first tooth finally broke through the gums! He`s finally going to have teeth! Ah so cute.

I was planning on catching the bus to the mall this morning while chuck and the baby are still asleep but I checked the weather online and uh yeah I don`t think I am going to venture out into the -40c weather today without the car. Ew and no thanks. I don`t fancy being an icicle.

I`m actually getting really annoyed right now trying to write this because my apostrophe seems to be backwards, and I already checked my keyboard language settings and it`s the right one, and it`s not doing this in any other programs either. I even tried switching to arial font and it`s still doing it, albeit smaller. Grr.. At least I have the new Mich.ael Bub.le single to make me happy.

Anyway here is an adorable picture of my little monster in the bath last night.

Blarg

I've been meaning to write a blog entry like every day I swear, but being back at work now I don't seem to have the time to do even the simple things anymore. Don't get me wrong I love taking care of the kids, that hasn't changed, but I am starting to realize that I just can't do these hours for much longer. I miss my own kid, and I'm too exhausted by the end of the day to be of any use to anyone even myself. Here's hoping tomorrow goes by quickly and that everyone out there in blogland is doing well.

Decisions, Decisions

I've made the decision that come June, when school ends and I'm laid off I will not be returning to work. It's six months and it seems too long to wait, but I don't want to screw anyone over in the middle of the school year so I'm going to tough it out as best I can. The plan is for Chuck to get a full time job and I'll work part time in the evenings here and there so I don't lose my mind from being at home all the time.

We've also decided to homeschool. I know he's only one, but we've been thinking about it since before he was born and with his special needs and my passion for learning and sharing knowledge it seems like the best possible option. I'd rather be the one making sure he is learning and getting all the supports he needs than trust some person I barely know with his education, medication and his future. When he's old enough he can make the decision for himself if he wants to go to public school or continue to be homeschooled.

Honestly I am still not happy about going back to work on Monday, but I think it will make it easier knowing that I have some idea of what we want to do and having a date on the calendar for my last day will make things easier. I guess it just came down to the decision that my child is what is most important to me. We've been surviving so far on one full time and one barely part-time income so I'm confident we'll be able to manage with the two of us switched around, and Chuck would have no problem getting a job as an EA or a CCA in a school.

I can't wait to be able to spend so much time with Skyler, teaching him, helping him learn about the world around him and letting him explore it in his own way, seeing things the way that only he can see them. Perhaps I am just nostalgic about the time I spent with N, teaching her one on one and watching her grow and discover the world around her. I want to share those experiences with my son.

Another reason I want to be the one to teach him is I have had instruction in the way that blind kids learn, and the best ways to encourage them to explore the world around them. Honestly working in the school system and being acquaintances with people who work as EA's I have seen and heard things I utterly dislike and I worry about my child being subjected to them. In December I was passing by the room next to our kindergarten room (which is a special needs resource room) and I saw an EA yelling at a special needs child. She was extremely angry that the girl had run ahead of her in the hallway. She was frustrated, and I understand human emotions and human flaws but honestly the way she was treating this child (who was screaming and clearly upset and scared by the anger of her EA) just sickened me. I wanted to say something, to do something, but I felt powerless. I made the decision to inform my supervisor and to keep an eye on it and see if it happens again. (The school and the daycare basically have nothing to do with each other, we're separate entities even though we share a building, so it was out of our hands, except to let someone in the school know.)

I also have spoken to an old acquaintance of mine I went to university with who now works as an EA in an elementary school, and her special needs student is a blind child. This woman has no training regarding blindness, does not know how to read Braille, and basically informed me that she spends most of her time photocopying things and making the print huge and that she thinks it's annoying. She was also judgemental about the child's family and how they handled his visual impairments.

One of the people I work with is also an inclusion worker, and while she is a wonderful person and very intelligent and is amazing when working with a large group of children, had the title of inclusion worker thrust upon her without her knowledge (Basically was hired and told after the fact that "oh by the way you're going to be an inclusion worker"). She had no prior training or knowledge about special needs of any kind and was not enthusiastic about being an inclusion worker. She has since obtained training and is now comfortable working with the child, but I fear this type of situation happening in my son's case where perhaps it won't end as well.

I think in our case homeschooling is the best option, and I am going to start as soon as I finish work in June. How do you homeschool a toddler? By giving him every opportunity to play and explore the world around him of course! Read him stories, sing him songs, show him pictures, and let him feel the words in his books with his fingers. I think he will learn by experiencing things more than by just being told to memorize things and repeat what's told to him. Plus that's so boring. Who wouldn't want to follow their own interests and learn by hands on activities and experiences?

Now if only I could get him back on some semblance of a schedule.. I hate the holidays for that. Everyone wants you to stay out late, they wonder why we leave at 9:30pm and we tell them the baby needs his sleep and they look at us like we're idiots. And as a result of him staying up until 10pm for several nights he refuses to go to sleep. We put him to bed tonight at 8pm (after yet another family dinner which we left early) and he has been awake in his crib, talking and yelling this entire time, it is now midnight and he has yet to sleep for even 10 minutes.. Oh it's going to be a long long week..