Wow

Things have been slightly stressful over here to say the least. The apartment is still not finished being upgraded or whatever you want to call it. Our tub was done today, the hardwoods are getting done tomorrow, the fridge and stove on Wednesday and the carpet on Thursday. We've been living in two apartments for the last week or so and it's making me insane. At first it was slightly neat, but the novelty has worn off. I would like to be in one place now. Right now we're back in the old apartment (minus our bed which we have to go move tonight into the living room of the other apartment because they're doing the floor in the bedroom over there tomorrow) so we're on the couches, and we moved Skyler's crib back in here for the time being. PAIN IN THE BUTT. Sorry, had to get that out of my system.

I've been having headaches the last 4 or 5 days and I don't know why. Stress maybe? But I've been way more stressed in the past and not had headaches. I don't usually get them so it's odd for me. Time is ticking on the school year, we'll be done in less than a month now. I have mixed feelings. I really do like my new supervisor, so the last few months have been good. I'm really going to miss the kids, but at the same time, wonderful glorious freedom! And I won't have to hear my name whined at me a million times a day for petty things, which is always a plus. I'm still going to miss them though. I'm working on a slideshow of our year together for the kids to take home as sort of a kindergarten grad present. It's looking pretty cute so far.

Skyler is talking and comprehending more. I love it. He is still on the duck and quack thing. He now will point out his rubber duck every time we enter the bathroom, and the ducks on the garbage can which I didn't even notice at first. He will say quack and duck whenever he sees them or whenever we go in the bathroom at all. He also says "Yay!" which is pretty cute. Oh and I learned yesterday that while giving Skyler a bath is like going to Seaw.orld because you're not in the water but you'll still get wet, that taking a shower with Skyler around is like telling him that he's going to Seaw.orld and he'll want to get wet even though he's already taken his bath for the day. I went to shower yesterday and he went straight from the bedroom to the bathroom as soon as the water turned on, and he flung open the curtain and laughed (thanks for the confidence boost kid! :P) and every time I tried to close it he just opened it again.

He's still 19 pounds, even though he has been eating and getting formula supplements when he doesn't eat as much(and sometimes even if he does) and we have endocrine tomorrow. I'm so not looking forward to it.. I'm betting the reason he isn't gaining weight is because of the meds he's on (steroids and thyroxine, they both can cause weight gain or loss) but I doubt the doctors will take that as a reason. It's likely going to be time to do the 8 hour blood test for HGH since he hasn't even gained a single pound in 4 months. Sigh. I guess we shall find out tomorrow. Fortunately I have tomorrow and Wednesday off since my kinders will be in kindergarten all morning instead of with me on Wednesday. Hopefully the appointment will go well.

Other Skyler news, I'm not sure of the exact reason but it seems that Skyler is seeing more lately. It could be that he is just developing and his eyes too are developing more, or maybe it's the patching that seems to be causing him to use both eyes a lot more while looking recently or his brain is connecting the other things and filling in the blanks for what he can't see, or maybe it's something else altogether but he is seeing more things/further away than he used to. I'll be passing by something while holding him and he'll reach out and try to grab even though in the past he had no clue it was there. Very exciting stuff! We have OT on Friday I'm excited to see what our OT thinks of this new development. All in all it's a busy week. I hope you all are well. And now your reward for skimming through this post:

Baby with an eyepatch!

He sure loves the sand! Gotta take him to a beach one of these days.

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.

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.

???

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.