Wednesday, March 31, 2010

Wordless Wednesday

Fitting In: Part 2

Thanks for letting me rant, and for taking the time to respond to me when I'm being less than graceful about my life. I would never ever want anyone to think that I don't love my child or smother (not literally) him with kisses each and every day. I love and appreciate every breath my child takes. He is the most amazing, wonderful thing to ever happen to me. I want to rant a little more though, so skip this one if you need to I won't mind.

I wish there were more kids in our community like Skyler. I don't just mean, cute playful and loving. I mean blind too. Don't get me wrong, it's not that I want people to suffer, and it's not that I'm jealous of others and I wish something bad on them.. I just wish that it was easier to find people in the community to relate to. There are blind children born all the time, but not a lot. Not enough for people to see them as normal. Not enough for me to be able to go out into the community and find someone else like me, someone who can relate. I find it's even hard on here to find other parents with blind children in the blog world. People don't talk about it enough, typical people aren't exposed to blind children enough. And who will my child relate to when he gets older and realizes/learns that most people can see. I'm hoping we will have some friends with blind kids, but I'm worried the only time he may meet up with other blind kids is at CNIB parties.

So when I say I have the desire to feel like I fit in, to feel like I belong, I don't mean that I wish my experiences were more like theirs. I don't wish that I had things easier, I don't wish that I could relate to their typical children, I wish there were more people who could relate me. I wish there were more kids like Skyler so he doesn't have to grow up feeling alone, feeling different than everyone else. We are all different in our own ways, but it helps us feel like we belong when we can find someone who is different in the same way that we are. I suppose that's what I want. To feel that there are more people out there who just get it. Less people who ask "What's wrong with his eyes?" less people who ask "Why is he so small?" and more people who can say "My child is tiny too, my child has nystagmus/strabismus as well."

And not just that, but I want people, even typical people to normalize blindness. Not to see it as something they should pity or look down on. I want to educate them, I want them to know that my child's life is no less wonderful or beautiful than theirs. I want them to understand that he experiences the world in his own way and it is in no way less meaningful. He has the same wants and desires as any kid, he wants to be accepted for who he is, to be loved, to be friends with others and not to be judged or gasped at or pointed and laughed at. In fact I'd say I want that for all children with special needs regardless of what it is.

I think the problem is that most "typical" people assume that most others are "typical" as well, without giving a thought to the possibility that maybe they are hurting someone else's feelings when asking why they don't seem to be the same as everyone else. And to go even further, some people don't realize that they need to educate their children on the importance of accepting others regardless of their differences. Some do, but a lot do not. It's not often a problem with the little ones they are exploring the world and finding differences and "sameness" everywhere. It's more when they get to the teenage stage and they don't think about anyone but themselves. A lot of teenagers are cruel to kids with special needs. I know this because my high school had a large program for special needs students. It was not uncommon to at times see kids laughing and pointing.

I'm hoping that maybe by being open about Skyler's conditions with everyone we meet, that someday we will pull others out of the woodwork. Maybe we will find others who have had similar experiences but didn't know where to go or who to talk to about it. I'd love to set up a play group for parents with blind kids, somewhere safe they could play for a while as the parents have time to talk, but I don't think there are many people in the city with blind kids who would have the time. Even a playgroup for parents of special needs children would be wonderful, but it's hard to find those other people. I have been trying for months to find any play group in the city (typical ones) and I've only found one so far. However, it's worth a try. I don't see why I shouldn't give it a shot.

Monday, March 29, 2010

Ranting & Raving Again

Sometimes I want to fit in, then I think about it for a few minutes and really, no I don't. Take for instance at play group. I started taking Skyler to a play group once a week (not every week, but now and again.) I'm sitting there with these other moms (who are older than me) and they're complaining about their first baby, and how hard it was to be in labour for 20 hours and how the drugs didn't work and it was so traumatizing (it was a normal full term healthy birth aside from the anesthetic not working) and they don't think they want to have kids again because of it. All I can do is smile and nod sympathetically. I don't even have the energy to get into my story, and I don't want people to look at me and go "oh poor you, how awful". I know they can't relate to my 25 hours of premature labour, terrified that my baby is not going to make it, the two months in the NICU and the discovery that my child is "different".

The same way that I can't relate to their normal birth and healthy baby who got to go home as soon as he was born.I hate that I sometimes feel annoyed with them for complaining about it. I want to open my mouth and say "I wish I had it that easy." But really I don't. I don't want to open my mouth and say that, and I don't wish that I had it that easy. I think our life experiences make us who we are. If anything, what I went through with Skyler, what Chuck went through, what Skyler went through, as made us all stronger. It's made us able to take on the world, we're ready for just about anything that can be thrown at us in regards to his special needs. It's helped me become a stronger mommy, a stronger advocate for children with special needs, a stronger advocate for my son. It made me realize that I know best, that sometimes specialists can be wrong. That when those other moms are freaking out and depressed because they aren't sure they're doing it right, I'm holding my baby thinking I can do this, I've been through worse.

And yet again in church on Sunday I had another mommy to an almost two year old (really nice lady) chatting with me. She says "Oh I remember when she was that little," and began to reminisce about her baby being 6 months old. She stops to ask me "just how old is he again I can't remember." Oh you know.. 16 months. Sometimes I am tempted to just say yeah, he's really advanced for a 6 month old, he can furniture cruise and eat finger foods all by himself! And I hate explaining to people that he doesn't walk on his own yet. I get this question all the time when they find out he's 16 months. "Is he walking yet??" Sometimes I just get frustrated and I want to say something less than nice like "No he doesn't let go of the furniture because he can't see the floor, he can't see 3 feet ahead of him, wouldn't you be just a little bit hesitant to let go if you couldn't see?"


But alas, I smile, I nod, I say "He's furniture cruising! He's doing really well, he can't see very far, but he'll be walking on his own in no time I'm sure." I don't make them feel bad for asking, really they don't have bad intentions, but I get asked these questions so often that I'm starting to feel the need to make him a shirt explaining everything, but he's so small that I wouldn't be able to fit it all on there. I suppose it would have to say something like "My name is Skyler, I'm over a year old, I don't walk yet and I'm visually impaired, any other questions?" Of course I'm sure they'd think of some like "Why is he so small if he's over a year old?" And then there are the people who question whether or not I feed my child. Oh trust me, this kid eats more and better than I do. This morning for breakfast he had 2 bananas and 4 huge strawberries followed (an hour or so after) by a teething cookie, ten ounces of milk and a peanut butter sandwich. Dinner is usually chicken breast and vegetables. Or meat and potatoes. He eats a lot.

Wow, okay it felt good to get all that ranting off my chest. Thanks for putting up with me! Aside from other people annoying me, I'm doing great. Skyler is learning so much and is so happy, life is good. I swear he will be walking on his own soon. He stood on his own the other day for a few seconds. And I had a dream about it last night, I'm pretty sure that's a portent of things to come.

Oh last night my internet went down for a few hours, and this is the result of that:

Yay rainbow pillows! They totally brighten up your black toddler armchair. Plus it took me less than half an hour to make, and that included ironing, cutting, sewing and stuffing.

Friday, March 26, 2010

Wednesday, March 24, 2010

Exhaustion Sets In

Wow yesterday was stressful. Beyond stressful in fact. I got a call from my mom around 2 saying that a family member was missing, I rushed over to her house, he was finally found with his friends at around 5 or 6, he ended up spending the night in the hospital. Anyway it was just a lovely day/night for me. Today of course continued to be exhausting, since I got no sleep last night. I'm not going to get into details since it's his life not mine, though it is entwined with mine as I do love him and care about him deeply. Let's just say it was a near-fatal thing and not at all good.

Aside from that mess things are going well. I've developed a solid idea of what direction I want to take in my career and in my life. I pretty much know where I am going with things, I just have to work toward my goals. I'm already taking the first steps. I want to go from childcare to education, so I'm going to start by volunteering in a school setting and get some experience, get my foot in the door that kind of thing. Wherever it goes from there I'm sure it will be the right path. I really want to work with children with special needs. I'm hoping I'll be able to get a placement with someone who needs me. The good thing about school hours is it's only 6.5 hours a day. I could do lunch program if I want too, and get into that so that I'm still making money over the lunch hour. But no matter what, I'll be done by 3:30 each day, if I get a full day that is. If not I might just work in the morning and at lunch program and have the entire afternoon with Sky.

Today I am just trying to recover from yesterday, and I keep reminding myself two more days and it's Spring Break! At this point, it's much needed. After all the stresses of having this new boss and not knowing what's going on, I will be happy to have some time at home to relax. I confronted her yesterday and asked if my hours were getting cut. She said they were not, so I am going to take her word, and I feel like I can calm down a bit now, knowing where I stand finally. I can pursue my goal of becoming an EA on the side while I continue to work at the daycare. I hope you all are having a much better week than I am!

Monday, March 22, 2010

All Done!

Thanks for the comments guys, it means a lot to me to hear what you think. It is annoying when people ask me about his age and development. I mostly respond with "He was born two months early" and just leave it at that. And if they continue or start prodding (and I'm in the mood to converse) I start into the whole hormone/blindness thing and usually they just stare blankly or give me the whole "I'm so sorry" thing. Ah well, what can you do? I try to educate, I think I do my part.

Today has been a great/not-so-great day. Odd how that works out. Skyler got a big package in the mail today from the CNIB. They're sending out a free "Tactile for Tots" kit to every blind/visually impaired child under the age of eight. I loved it! I opened it up and it has a tactile image book, a guide for the book, an audiobook, a tactile map, a tennis ball, 3d paints, and those waxy string things to make our own tactile illustrations. The book is really cool, and Skyler loves it already, it has print, Braille, and tactile illustrations. He spent a long time running his fingers over everything while I read it to him. I'm hoping maybe I can find somewhere to order more tactile books since he enjoyed it so much.

Onto some more exciting news from today. As you know Skyler's signs are improving day to day and he uses them so often, but his verbal skills have been lacking. Well he's started saying his first words aside from no and mama and dada. He now says "All done"! Yes I am extremely excited about this even though it doesn't seem like much. It's huge for us. And he repeats it over and over when we say it, and he will tell us when he is "all done" doing something. I picked him up today when he was trying to play with my laptop, and I held him on my knee and he started to say "ah dun!" over and over until I put him down on the floor. Too cute!!

And now for the not-so-great part. We got our lease renewal form today, and our rent is going up in October by another $50. Honestly I don't think a one bedroom apartment is worth the price it's going up to, but I'm not sure we have many other options. We looked online and couldn't find anything good, plus our big plans have been to save up for a mortgage on a house. So this is kind of throwing a wrench in things. That's $50 less each month to save for a down payment. I don't want to stay in a one bedroom and have to pay too much for it, but I don't really want to move. Looks like we may have to. Our lease is up July 1st, but they want to know by April if we're staying or going so it's going to be hit and miss.. Here's hoping it all works out for the best.

Oh and also thanks for saying my glasses are cute :) The frames were $99, and I got the lenses treated with everything I possibly could and it came out to $180 or so. Glasses are so expensive, but then again I had my old ones for five years, so I think it's well worth the investment since I can't see anything without them. I only wish I could spend a few hundred to give Skyler a bit more usable vision. Then again I am grateful for what he does have, so I can't really complain.

Sunday, March 21, 2010

Eventually

Last night I went to my first concert ever. I saw Bi.lly T.alent and Al.exis.onfire. It was amazing. Skyler had a good time at home with daddy, and I went with my friend who got us the tickets for my birthday back in January. Oh and yesterday I finally got my new glasses! Yay I can see again! Of course I am still getting used to them so my depth perception is off and I feel a little wonky wearing them. I'm sure I'll get used to them soon.

Skyler is doing well, he's a very busy little guy who can eat his weight in food. He will eat just about anything you give him. Of course he is still about half the size (or less) of the average size toddler his age. The other day we were grocery shopping and a woman stopped to look at Skyler. She exclaimed "Oh a newborn!" Then corrected herself "Well he must be 6 months." I looked and her and said "Actually he's 16 months tomorrow." She of course remarked about how tiny he was, and then she noticed Chuck and said "Wow you must be his dad, it's like cloning!" before going on her way. I honestly don't mind that he is small if only because it distracts people from the fact that he's not at the same stage developmentally as the other babies/toddlers. He still crawls instead of walking, and he doesn't say many words. He can sign like crazy though, which is a good thing.

I think he will grow and develop on his own time and with help, but I don't feel like being lectured by random people because my 16 month old can't walk yet and is behind on verbal communication skills. He's on a waiting list for a speech therapist, but it will likely take about 2 years before they get to us. It's been almost a year already so one more to go. Who knows maybe by then he will speaking on his own and at the right level for his age. Either way it doesn't really matter, I'm going to love him just the same whether he uses signs or words, we're lucky he can at least communicate using signs. It means he's grasping the ideas and concepts he just hasn't figured out how to form the words yet. It will come with time I'm sure.

Today is the first day of spring which to us is an important day, we're going to spend some time together as a family before Chuck goes to work and we're going to plant some seeds, just as we do every year. I also got a mini rose plant, it's very cute. This year we're not using pots, instead I took some old coffee cans and painted them with some shiny metallic paint and we're going to poke some holes in the bottom and use those. We're trying out some small vegetables this year like baby lettuce and some peas. If they don't grow well inside we'll transfer them to my mom's garden once the frost has passed.

Anyway I hope you all are well, and I leave you with a picture of Skyler getting a kiss from mommy.

Wednesday, March 17, 2010

So Close!

Things at work are still up in the air. The new supervisor seems ... well I'm not sure yet. I think she is just trying to get a feel for the place. Also she told me that our centre is $7000 over budget for staff and that her boss is in the process of auditing the staff hours.. I'm trying not to stress about it.

On that note I want to tell you Skyler let go of the table for the first time yesterday!! I like to put a rice cookie or an animal cookie on the living room table for him to snack on between meals, and yesterday he was shoving the rice cookie in his mouth and decided he needed a better hold on it so he let go of the table and shoved that cookie in with BOTH hands! He did this twice! And didn't fall or lose his balance at all. We're getting so close, he'll be walking on his own soon. Very exciting.

Today is a day of cleaning. Bleh, not the most exciting thing, but it needs to get done. Better now than the weekend I suppose, that way I can relax once I have the time off. I'm supposed to have Spring Break after next week, but C's work might have me come in and work a 40 hour week because they can't find anyone else. Sigh. I'm hoping they do find someone. Oh well, if not then it's more money for us I suppose, which is not a bad thing. A break is nice too though. Well, whichever it is I will be happy. I hope you all are happy as well. Sorry I haven't been around much, it's been busy! I try to keep up with your blogs even if I don't comment.

Friday, March 12, 2010

??? Continued.

Once again I say WOW. I'm in complete shock right now as I just found out my boss has been "terminated" or something and is barred from the premises, and is not even allowed to call the centre. She was supposed to be working until March 24th. Apparently we have a new supervisor as of Monday. Uh come again? Oh and my position will likely no longer be necessary. So I've already rewritten my resume. I am hoping I will be able to stay until June.. If not I may take a few weeks off to find something once they lay me off. And now to distract you from my insane job life.. A picture of my gorgeous toddler signing for bedtime while he's in the bath.


Wednesday, March 10, 2010

???

Wow. Everything seems to be up in the air here. Funny aside, my day yesterday started off with one of my boy kinders saying to one of the girl kinders "you can come to my house and we'll go in my room and I'll take off my pants and I'll show you my p***s". I had to quickly take him aside and explain that this was completely unacceptable. (He has some trouble with social situations). He seemed understanding of this and agreed that he could keep his private areas and conversations about them to himself. This was immediately followed by one of the other kinders coming up to me crying because there was a feather in the room. I kid you not. A feather in the room, had this little girl in tears. I had to quickly rescue her from said evil object. As you can imagine this was a set up for the kind of day I was going to have.

My boss announced at a staff meeting at 3pm yesterday (that I could not attend) that she is quitting as of today. She told me this morning. My head is still swimming. I'm not sure what is going to happen next. She says that she is done as of March 24th, two days before Spring break. She says this gives them 3 weeks to find a replacement. She said she disagrees with the way the company is being run, apparently the head office want to change staffing and run the centres with a skeleton crew. I know for a fact that this is not going to work out. Having only the minimum amount of required staff for the ratio is going to tank the centre. There will be no time to do the required cleaning and other tasks that are goverment regulated if no one is ever out of ratio.

I also know that this does not bode well for me. I do not have my qualifications yet, I am still classified as simply an assistant. Which is funny because I do the job of an ECE but get paid as a CCA. Meaning I'm doing more than I'm getting paid for. Back to the point, they are going to have only one staff during the day as required by law for ratio and I know for a fact that as of September that staff will not be me. They are already breaking regulation by not having enough ECEs, and there was one staff member who is going to be classified an ECE by next school year and she was promised an 8-4 shift when she returns to our centre in September. Meaning she will be the one doing the job I am doing right now. Where does this put me? I have no clue. Maybe they will find me another centre. Maybe not.

I think it's time to break out the resume and update it and start casting my line out there... I'm not sure yet what to do about this.. but I have to figure something out. Right now I am mostly a bundle of nerves. I am worried about the new supervisor. Will s/he be easy to work with, will they understand that I have a child with special needs and that I need time off to go to appointments and the like? Will they decide that they don't need me during the day and cut my hours down to 2 hours a day? If so I will quit, I am not going all the way out there for 2 hours a day. And then when I rewrite my resume what kind of jobs will I apply for? More childcare? Educational assistant? I just don't know yet.

Also my benefit coverage finally started this month. I just got all my package/coverage information in the mail. I went to get my eyes checked a few days ago and found that I definitely need new glasses. So you can guess of course the exact one thing that my plan does not cover. Vision care. No glasses, no eye appointments, nothing. I have more dental care than you can shake a stick at, but nothing for eyes. HELLO PEOPLE MY SON IS BLIND! Ugh. Thank you Murphy's law. I know Canada has awesome healthcare, but they don't cover vision, drugs, or dental. Along with a few other paramedical things. All of which my new plan covers except vision. I am having a rather frustrating day as you can see.

Which has been topped off by Skyler dropping his high chair tray on my toes, and then he decided he wanted to listen to some music so he turned on the stereo to a deafening volume and I had to turn it off and he was screaming his head off because obviously it hurt his ears. Sigh.. I think it's time for a little meditation and maybe once he goes to bed a nice bubble bath for mommy.

Friday, March 5, 2010

Friday: A Happy Day

So I almost forgot to mention Skyler had another endocrine appointment March 2nd (yes it's been 3 months since the last one) and they found he has gained a kilo! And a couple inches of height. So no growth hormone tests yet! We were very excited, so of course the (third random) endocrinologist had to remind us that he will very likely need it eventually. She wasn't being mean, and yes I know full well we are just staving off the inevitable for a bit longer, but hey come on lady do you really have to rain on our parade? Oh well, a little rain never bothered me anyway, I am still so excited to see how much he has grown. He's actually grown out of most of his 6month clothes!! Can you believe it? He's even fitting into some 12 month stuff! So very exciting.

Today has been a good, but busy day. I worked this morning as usual, my kids were actually pretty good for the wild spirited little ones that they are. After work C and Skyler picked me up and we came home and the three of us took a nap. It was refreshing honestly though I am still finding myself tired now. After our nap we woke up and C and I went to get our eyes checked. It was odd going to see an eye doctor for someone besides Skyler. Of course the eye doctor noticed Skyler right away and asked if he had been to children's hospital. I told him right away that yes, of course, he's legally blind he has optic nerve hypoplasia, blah blah blah, I rattled it off because I knew he would know what I was saying unlike the lay-people who comment on Skyler's eyes. Anyway my prescription is being tweaked which is good because things have begun to get very blurry for me lately.

C apparently has almost 20/20 vision, he just has a problem with glare or something. So the doc wrote him up a script for a very minor correction. He wants to get coloured contacts. Which I don't understand much as he already has blue eyes. I suppose having brown eyes I find blue eyes to be the most captivating and therefore have no idea why he wants to change his eye colour. Of course he says it's because he wants purple eyes. Go figure.

After the eye doctor we went out to the neighbourhood where I work because one of my kinder's moms said she had a bunch of stuff for Skyler. They're a super nice family and they had a couple of big bags of clothes their little guy had outgrown so they passed them on to us. The cutest thing they gave us though is a gorgeous leather toddler chair with a matching ottoman. It was exactly the kind of thing I had been looking for originally when I wanted to make Skyler's little living room area. And as you can see, he loves it already.