Taking It Day By Day

Fighting For Our Children's Rights

2009-12-26T23:23:00.003-06:00

I've been following this story on the CBC for a while and if you read through the comments (many as they are) you may be able to pick out which ones are mine. This woman is fighting to put in place the supports her daughter will need when she enters school. As always there are people who are opposed to this idea. The "innocent taxpayers" who abhor the idea of paying for someone else's special needs child to have the interventions to save her life made available to her in the public school system. Sometimes I just don't understand people...

Merry Christmas Everyone!

2009-12-25T06:38:00.003-06:00

Sky guy made out like a bandit at his grandma and grandpa's christmas dinner last night (they celebrate it on Christmas Eve). He got a new sled, a stuffed dog which he is terrified of, a set of 3 ducks on a string that waddle and quack when you pull them, a xylophone which admittedly is mommy's favourite of the night, and a new sleeper. I also got a package in the mail yesterday from my aunt in B.C. She sent him a lot of really adorable clothes, which he will grow into by next winter, and a box of chocolate chip cookies, which he will enjoy this winter, possibly with some help from mom.

Today is my side of the family's Christmas celebrations. It's my first year with my parents separated so this should prove interesting. I have to go to my mom's for dinner, and my dad wants me at my nana's afterwards. I've got my fingers crossed that it all works out without too many problems..

I've started making a list of all the stuff we need to get once the mad holiday rush is over. Which I suppose I should explain to my non-Canadian friends. I just learned last year actually that you guys don't have Boxing Day. The day after Christmas all the stores put everything on sale really really cheap and it's like a crazy mad rush/stampede for people to buy things. The malls are absolutely insane for pretty much a week surrounding Christmas, before and after. I'm hoping I'll be able to go shopping Sunday or Monday without getting trampled as I have a few things I need to get and now I have some Christmas money to spend. I also sold my dining room table yesterday since we've decided to use a smaller one for now. So that was an extra hundred bucks in my pocket.

I must admit being home with Skyler is hard, not because I don't love every second of being home, but because he is calling for me all day everyday, he wants to be snuggled and held and have his mommy and no one else. Which is not the hard part. The hard part for me is knowing that I have to go back to work in a few days and I won't be able to be with him every day anymore. I'm starting to want to stay home with him. I want to be the one holding him every time he falls or needs hugs and kisses. I love watching him play and grow and learn. I don't see him enough when I work these stupid 11 hour days, not to mention I don't get paid for 2 and a half hours of it. When I go back in January I think there are some serious questions I need to ask, and if I don't get the answer I need then things may have to change a bit.

Merry Christmas everyone, I hope you are all well and enjoying your families.

Best Christmas Gift!

2009-12-23T22:15:00.002-06:00

He gained an entire pound since December 1st!! (he weighed in at 14 pounds at his endocrine appt.) Ladies and Gentlemen, the baby who has weighed 14 pounds for the last 4 months is finally a hefty 15 pounds 6 ounces at 13 months old!

That is all.

Neat & Tidy

2009-12-23T10:29:00.003-06:00

It's a good thing we rearranged his stuff when we did because he woke up early the next morning and decided he was completely ready to crawl and pull up on furniture and walk around it. Yesterday for the first time, I plopped him in the middle of the room not near any toys, he crawled over to the living room table and pulled himself up, (laughing triumphantly of course) and walked around it, trying to eat the table frame the entire time. I guess that's it, he's mobile now. We're screwed.

As for his zebra, he was standing at the end table next to the zebra last night, he let go momentarily and bumped his head on Mr. Zebra. He then got back up, pulled himself to stand at the table, reached over and gave Mr. Zebra a good shaking. He went at it for a solid 10 minutes. I pity anyone who crosses my child's path. Poor zebra, he must have head trauma after all that shaking. I think Sky got him back pretty good. And we got a video of it. We were both cracking up, it was pretty funny.

After tackling his area yesterday I went tornado on the apartment with Chuck's help. We purged a lot of crap, reorganized so much stuff, and now our living room is as nice as his. Our bookshelf is just as pretty as his, and our storage closet is no longer throwing things at us as soon as we open the door. Everything is put away neat and orderly. Some things went to the consignment shop, others to charity. I'm quite happy with the way my apartment looks now I must say. The bedroom however.. Let's just not go there. I suppose that should be the next project.

Today we're going to try and get Skyler weighed and measured. I'm hoping, hoping, hoping (fingers crossed) that he's grown at least a teeny tiny little bit. I've got my fingers crossed that now that he's not on such a high dose of steroids, that he'll begin to grow like he should.

Midnight Decluttering

2009-12-22T01:37:00.005-06:00

So it is 1:40am and we just returned from W.alm.ar.t which is conveniently open 24 hours for the Christmas insanity. In case you are wondering we were most definitely not Christmas shopping at all. As I was sitting in my living room I realized I was tired of looking at a giant mountain of toys. I remembered my former plans to create a toddler living room for Skyler and decided perhaps since he's now becoming mobile I should start putting that plan into action.

As you may remember from previous pictures my living room looked something like this:

(ignore adorable baby playing with plastic bottle if you will)

$32 later it now looks like this:

The zebra and the blue car will soon be leaving us (put into storage for the time being until Skyler is ready to use them), the red one and the musical table will be moved and I will be placing a toddler couch along the wall that the zebra is currently against. The musical table will likely be in front of that as sort of a baby coffee table, except without any coffee.

Anyway now his part of the living room is making the adult part of the living room look bad. However, I am still in love with it, I'm thinking of moving to his side of the room since it looks so much neater. Honestly I love the shelf unit idea. The top box has his stuffed animals and the bottom is all his plastic and heavier toys. And I can finally have his books accessible to him. Before they were up on our bookshelf which is much too high for him to reach. I used to have to take them down one at a time just to read him a story.

There you have it. My midnight decluttering project. Oh I also managed to crochet an entire scarf which is as long as I am tall. All this is in one day. Sadly this is probably the most productive I've been in a while.

Sunday Morning

2009-12-20T13:24:00.005-06:00

If you know me in real life then you know I have strong opinions about the church and mainly how much I dislike being inside one. BUT I discovered a church that is different than the rest. I remember going to a Chri.stian church when I was a child with my grama, where the most positive things I gained were some donuts and a cup of apple juice and the negative things were fears of G.od and going to hell for all eternity. (No offense to anyone, that's just what I got out of church as a small child).

Today I packed up my family and we headed to the First Unitarian Universalist Church where all beliefs are respected and the core values are love, respect, and asking questions on your own spiritual path wherever it may lead you. The service was beautiful! There was lots of songs, the speaking parts were meaningful to us and pretty short (ten minutes at most) there were several different speakers, telling stories and leading us in meditation. I loved that there was meditation! They spoke of the importance of Winter Solstice and that it is a time of rest and pause and invited us all to pause, take a deep breath, close our eyes and take a few quiet moments together.

The children put on a pageant, they sang songs and there were people playing instruments (guitar, piano, bass, etc). The play they put on was so cute, it was about a lady who watched the children waiting for the school bus each day by a big fir tree and she noticed one little girl who had no mittens. So she went home and took our her yarn scraps and knitted some mittens for the little girl and left them on the fir tree the next morning. She watched with delight as the little girl found the mittens and put them on. (The stage was set with a big artificial tree) The kids in the play stopped to sing a song, and invited everyone in the congregation to come up and put the scarves, hats, mitts and everything else they wanted to donate onto the tree. They even had extra mittens to put on the tree for people who would like to, but forgot to bring something (a lovely lady handed some to Chuck and Skyler). They take the mittens and scarves and hats to a charity for children after the service I was told. It was beautiful! I wish I had known, I would have crocheted something.

And as for the people, they were so friendly and welcoming! Everyone came up to say hello and comment on how cute and well behaved Skyler was. Everyone had a cheerful "good morning!" for us. Even the lady next to me said good morning as I sat down and chatted with me at the pauses during service. A lady behind me tapped my shoulder to say hello and comment on the service. And afterwards lots of people came up to welcome us and remark on how cute our baby was. Even the reverend (a lovely lady) came up to us to say hello and that she was glad we came. She told us the baby is more than welcome, and she doesn't mind "baby noises" at all during the service. She said if he is more comfortable we are welcome to walk him around in the church or the foyer (or wherever we'd like) during the service.

So yes for the first time ever I can say I enjoyed church, and in fact I want to go back next week. I definitely wouldn't mind being a member of this congregation at all.

In other news, my little monster learned to hold his own bottle last night! It only took what seemed like forever, but he's doing it on his own now. OH and I'm on winter break! Woohoo! I hope you are all as well as I am today. Anyhow I must go start rushing around to get things ready for tonight's dinner.

Happy Holidays Everyone!

It's Almost Here!

2009-12-19T11:03:00.004-06:00

Thank you everyone for the wonderful advice and ideas on the last post. Today I want to give a quick update before I run off to get things done before tomorrow's Winter Solstice celebration with friends. For Skyler last year I crocheted him a sweater and a hat for his Winter Solstice/Yule present. This year I made a blanket for Chuck, Skyler and myself. It's one of those knotted fleece blankets. I must say I love how it turned out. I'll have to take a picture of it tomorrow after Chuck and Skyler unwrap it.

And now I give you Skyler the King of the toy kingdom:

(I feel it's important that you know that this is only about a fifth of his toys.)

Cast Aside

2009-12-16T19:21:00.004-06:00

I have to tell you a secret. I have 17 kids that I am with almost the entire day. And I love them all, they are awesome, crazy, fun, annoying, silly, smart, wonderful little individuals. But to be completely honest I have a soft spot for the special needs kids. It's not to say that I don't love my other kids and show them all the care and respect that they definitely deserve, but I do feel more connected with the ones who need a bit more support. Sometimes I can't help but just pull one of them in for a hug. It's probably because I am a parent to a child with special needs, but I just can't help but feel something for them.

It hurts sometimes to see that the other kids just don't understand the Autistic boy, that sometimes they ignore him even when he is calling their names and tapping them on the shoulder because he would like to ask if he can play. Sometimes it drives me crazy when the ADHD one is racing around the room unable to sit still for two seconds, and falling off his chair everytime I turn around because he just keeps tipping it, but I love him. I love them for being themselves, and I wish sometimes that the others were more accepting, more understanding. I try to help them understand why their classmate repeated to them 4 times that they needed to be quiet during the story, and why he doesn't like when they do certain things or why he gets to have his own special toys. But I am finding it hard. How do I tell the other children that he is different?

I have done the whole my child is different than you because he can't see, but you are different than him because you have blond hair, and he has brown hair, or you are different because you are a boy and she is a girl. I have done the whole we are all different and unique thing, but I can't bring myself to do it with our Autistic boy. I don't know how to tell the other kids that Johnny* is different and that's why he gets special toys or that's why he gets to do different activities or why he repeats things sometimes. I usually just tell them that it's okay, they don't need to worry about it, he is just expressing himself in his own way and that is fine. Or that his toys are from home.. They know he is different, I can see it in their eyes and they way they treat him but they don't understand. And I don't want to alienate him and say in front of him how he is different than them or that he has Autism..

Yesterday I had one of our kids yelling out over and over "Jamie's dad is dead! Jamie's dad is dead! Did you know Jamie doesn't have a dad because he's dead?" of course I had to put a stop to that, because it's not a pleasant thing to be reminded of or to be yelling out across the room. But I also understand that these kids are five they are trying to figure out their world, they are learning new concepts and trying to understand them, and death is one of them. Luckily Jamie* wasn't extremely upset by the other kid screaming it out, but I wouldn't blame him if he had been upset. To come to the point I most definitely don't want my kids screaming across the room that Johnny is Autistic. And I am sure that at some point it would happen, plus how to explain what Autism is to a 4 or 5 year old?

In other words, someone help me please if you have some idea of how to handle this situation I would love to hear it. When it comes to blindness hey no problem, I can explain that one to the kids easy enough. But Autism is a pervasive developmental disorder that ranges and varies so much it's even hard for most adults to understand, let alone a child. I love these kids, I know it will take a lot more maturity and age for them to care about or feel the same way as I do about the special ones in our lives, but I want to start them down the right path now while they are young. I don't want them to be the teenagers who laugh at the special needs kids because they just don't get it.

*Not their real names obviously.

One Year Ago

2009-12-12T15:45:00.002-06:00

Today Trish's post over at Fertile Hope reminded me of what I was going through this time last year. In fact I wrote a blog post exactly one year ago today, that sums up how I was feeling about having a baby in the NICU. And at this point last year I was only half way through the NICU stay. Sometimes when I look back I'm completely amazed that we made it through at all. The NICU is not an easy thing, and if you have lived through that experience as a parent you will know exactly what I mean.

All I know is that I don't take my son for granted. We worked hard to get him home and do the best we could for him. And we're so lucky to have him here today, growing up and thriving and smiling and being his wonderful little self.

Tonight is our YMCA Christmas party. I'm kind of excited if only because the food is usually good at the training sessions so I'm hopeful the dinner will be catered by the same people. Instead of charging a fee they ask that you donate some food to the Christmas Cheer Board which I think is an excellent idea.

Last night we went on a hayride as our Christmas party for my centre. It was fun even though it was freezing. The horses were gigantic, afterward there was a bonfire and some hot chocolate, which wasn't actually hot by that point, but it was good nonetheless. Afterward my work friend came back to my place and we played ro.ck b.and until she had to go home. It was a good night.

But my little monkey is making monkey noises because I'm not feeding him his banana fast enough, so I had better get on that.

Only One Week To Go

2009-12-10T17:51:00.002-06:00

Wow, life has a crazy way of dragging you kicking and screaming into the fray without so much as a how do you do. What I mean is 4 and 5 year olds are insane, and I've figure out that they are pretty much just small drunk people whose job it is to make you pull out all your hair in a frenzy while they surround you yelling your name and demanding you perform some menial task for them right this very instant. Honestly, I love love love my job and my kinders, but oh man. They are so excited for the winter break and Christmas, and they are so high energy right now (which the group of kids that I take care of are high energy already, such as mr ADHD and the rest) that I am standing in the middle of the room as a whirlwind of children pass by and I hopelessly try to remind them to use their walking feet and their indoor voices until I finally snap and make them all sit and have a bit of quiet time because they just aren't listening or respecting their teacher (me) or their friends the way they should be.

My mantra, which I repeat in my head as I go about my day is "I love my kids, I love my kids, I love my kids." Sometimes followed by "they'll go home at the end of the day. Only 10 more hours until they go home."

Though not all of the day makes me insane, there are always the lovely moments when they help their friends or use their nice words to solve problems or when one of them comes to me to say they've drawn me a picture to take home. I love their hugs and that they fight over who gets to be my partner when we line up. I love the smiles, the laughter, the giggles, the way they light up when they learn something new. Even though I am losing my mind at the moment, it's all worth it in the end. I know this.

Skyler is amazing, on top of saying mama, he is crawling (not very far yet as he doesn't see much so he kind of just goes to whatever toy he can see and then plays with it for a while. I don't think he realizes he can explore the entire apartment yet, which I am not in a rush for..) he pulls to stand without a problem, his focus is awesome, he is making lots of eye contact which is something I couldn't have imagined when we first found out he was blind (he never looked at faces), he's very interested in the world around him, and I love seeing that. He is so amazing. I can't believe one day he will be four or five and I will have to answer so many of the questions I answer for my kinders each day, for him. Every day is an adventure, one that I am so lucky to be on.

Speaking of Mommy..

2009-12-06T13:25:00.004-06:00

Last night my little monster said Mama for the first time!! I heard him on the baby monitor calling for me! He's been saying dada for months and months now, but mama was elusive, he would sometimes make a mmm sound but only when he was really upset. Last night he was just yelling it out in the crib Mamamama mamama mom mom mom mama. :D I couldn't be much happier.

Yesterday we went to the CNIB Christmas party, it was great! Tons of food, lots of other families with little ones like Skyler (limited vision or none at all) and Skyler got his first picture with Santa Claus, and he got to meet Santa's guide dog! (This Santa was blind! How cool). Our OT is going to email us the pictures she took of Skyler on Santa's knee, but in the meantime I have a picture I took of Skyler meeting Santa's guide doggy. And one of him playing with their Christmas tree (don't mind the cookie stains and peach sauce on his sleeves in the second picture, he enjoyed the Christmas sweets ;)

Being His Mommy

2009-12-05T13:10:00.005-06:00

Some days I just really love being a mom. I mean I do everyday when I look at his gorgeous little face, but there are always those moments of "this is hard" and other whining. But when I really look at the big picture, I love being his mommy. I honestly think I was pretty well prepared when I decided to get pregnant, I had read all the books, I had taken care of babies on a full-time basis before, obviously I knew that it would be different when the baby was my own. But I had a good head on my shoulders, was really aware that it wouldn't be a walk in the park, with the waking up late at night, and everything else that comes with a baby. I knew it was a huge responsibility. I was prepared for all that. I think the thing that caught me off guard at first was his special needs. The day after he was born when the socially awkward endocrinologist came into my hospital room and said that my son would likely need to be on medication his entire life. I had barely even seen my brand new baby, and here was this stranger telling me something was wrong with him.

Even that though, I believe I have sort of grabbed the bull by the horns so to speak. I have taken everything that's been thrown at me as a mom, I've taken it all and found out what to do about it, I've been as proactive as I possibly can be. I know there are more challenges yet to come, but I feel content when I take a step back and see how well we have things under control. We may not be rich but my son will never go without a roof over his head, a full belly, and nice warm clothes to wear, oh and toys, so so many toys (although not really a necessity) and the medications he needs to live. He will never go without medical care, or proper attention. We recognize the signs of the things that would require a trip to the doctor's office or the ER.

He is 90% of the time an extremely happy baby. He is loved, snuggled, hugged, sung to, played with, read to, and cared for every single day. He knows he has people who love him and care for him and who will keep him safe from harm. He loves playing with us, he loves interacting with us. My baby has the most beautiful sunshine smile, and he keeps me happy when I'm feeling blue. When people ask me if I'd ever have another child knowing that there's a chance they may have special needs like my son I just laugh at them. I would have five more if they were guaranteed to be like my Skyler.Skyler I am so happy to be your mommy and so lucky that you are my baby.

Thank You

2009-12-02T19:35:00.003-06:00

Thank you. I can't say it enough guys, you remind me of who I am and why I write this blog. Sometimes I just need to be reminded that I am doing okay. And now for some funny things!

I had Skyler on my break at work the other day and I was carrying him around for a bit. Here are some snippets of kinder conversation from my kids.

-"uh Brittany, what is that on you?" (said by our adorable autistic little guy)
-"well, it's a baby."
-"oh."

-"he has googly eyes!!"

-"you're rocking him too fast. he says he likes it slow like this" (as he takes the carseat handle and pushes me aside so he can rock Skyler. haha)

From the other day, when Skyler wasn't with me:

-(one of my little guys was going into the washroom) I'm going to lock the door, so no robber comes and takes me.

-"Today we're learning about Christmas celebrations in Mexico."
-"I had a dog and his name was Oliver , but he died."
-"Um okay.. I'm sorry for your loss.. We're talking about Christmas in Mexico though.."

-It's too loud! If you guys keep being so loud my whole body's just gonna turn into a puzzle. (said with complete seriousness, as I was sitting there completely confused.)

-"You can't be a mom! You're a teacher!"

And countless other things I have forgotten. Kids are hilarious.

And thank you again, all of you for your thoughtful comments. I appreciate them so much.

Foibles & Follies

2009-12-02T04:41:00.005-06:00

So Skyler had his endocrine appointment yesterday. It was hectic, I had a lot to do at work and I had someone come in to cover me from 10:30 until 1pm because I was under the impression that the appointment was at 11:15, Chuck was supposed to get me at 10:30. He slept in until I called him at 10:40, and then came to get me at 11:15 saying that the appointment was actually at 11:45. We didn't get in to see the doctor until 12:45. Didn't get out of there until 1:40 and I didn't get back to work until 2:40. Timewise it was all quite ridiculous. However the appointment itself went quite well.

Our endocrinologist has apparently vanished into thin air and no one told us until we got into the exam room yesterday. And by vanished I mean he went into research in something to do with lipids. Which is actually fine by me because he always seemed way too nervous when he was speaking with us. And from talking to this new endocrinologist who is only covering his position for a while I think I can see why he seemed so nervous. New endocrinologist (female this time) said Skyler has been on way too much prednisone. We had been following old endocrinologists instructions and giving him stress pred for every little cough, sneeze, funny look, etc. He instructed us to give him stress if he showed any signs of anything. New endocrinologist says that the dose we were told to give him is a triple dose, and should only be given if he`s really ill like projectile vomiting with the scarlet fever. She said we should only give him a double dose (not triple like the other endocrinologist said) for stress if he has a fever of 39c. Anything less than that he should be on normal dose. He has been on a triple stress dose for months now! Because he`s been teething and had a cold and every other little thing the old endocrine told us to look for. I`m sort of mad at the old endocrinologist now.. I feel like maybe he didn`t know exactly what to do with us because it`s so rare.

New endocrinologist said we weren`t going to check his growth hormone yet. She said that she wants us to do this reduced prednisone thing for four months because, guess what, too much steroids will cause him to stop growing. She thinks he`s had too much prednisone and if we reduce it he should start growing again. If he doesn`t in the next four months then we`ll look at his HGH levels. She said that she was taught in Montreal and that depending on where they take their schooling they are taught different ways to prescribe the steroid for adrenal insufficiency because as she put it we don`t know exactly how much cortisol our bodies produce in a day or when under stress and each person is different. She said the idea is that normal everyday stress like teething or simple colds he should be able to handle with a normal dose because otherwise he would be in a stressful state all the time, and he shouldn`t have that much prednisone in his body. She also said when we stress dose him just give it to him twice and after that go back to the regular dose.

This means we`ve been overdosing our son with steroids. Sigh.. Add that to my list of things that make me a great mother. I know I was just following his doctors orders at the time. But somehow it doesn`t make me feel any better. I honestly am just trying to do the best I can. I love him so much. I wish I just instinctly knew how to take care of him without a bunch of stupid professionals who (some of them) clearly don`t know what they`re doing.

And now to cheer me up, and remind me that he is at least loved and happy even if he is a roid baby.

Almost December

2009-11-29T10:19:00.003-06:00

Time is passing by so quickly I almost have no words. I'll be on winter break once Decemeber 18th hits, the kids are out of school and therefore our daycare is closed. I was planning on working at a different Y (preschool daycare open through the winter holidays) but Chuck is insisting that I take the time off to spend with Skyler. I've been feeling like an absentee parent lately. Working on odd split shift means I leave at 6:30 in the morning and don't get home until 6:30 in the evening. It's killer, somedays I get a ride to work with a friend and I don't even see Skyler in the morning. So I see him once a day for about an hour before he goes to bed. I'm starting to wonder if he thinks I am that lady with the glasses who visits once in a while.

Come summertime I think I will have to find a new job, I'm hoping to just transfer over to another Y which is a preschool daycare that is within walking distance of my house. There's no before and after school so it means no split shifts anymore, and I can walk there and back and won't need to use so much gas. I'd have more time with my son and won't have to get a ride everyday. Also it's in a Y Fitness Centre/Gym so I'll be able to work out on my lunchbreak. My coworker and I have decided to hit the gym after work a few days a week and try to lose some weight. Luckily I am actually done work at 5 each day, but I stay until Chuck is done at 6. My coworker is done at 5 too, so instead of me waiting around the school for an extra hour she's going to drive me and we're going to work out until 6 and then go home (and it's right by my place so I'll get home before 6:30 probably.)

As for Skyler he is growing up too fast! I feel like I am missing everything. The other day I was sitting in the living room with him. He was in his play area sitting in front of his toybox. I turned my head for a minute and when I looked back he was standing holding onto his toybox! I laughed and went back to what I was doing and when I looked back he was dragging his toybox across the room. WTH? He is climbing and pulling to stand with ease now these days. He's almost walking on his own too. His balance is getting so much better. Right now though he has a nasty cold that's got him not feeling a hundred percent. There's lots of congestion and he's sleeping in the swing because he can't lay flat or he won't be able to breathe. The other day he was in the swing and we have always just used the snap down part to keep him in it because he never wiggled out. Well I walked into the bedroom and he was backwards in the swing! I thought his head had twisted off the position he was in was so unnatural!

You can bet we started using the buckles in that thing after that little incident. He's also been crawling! My little tiny man is learning to crawl! And when I say tiny I mean it, he is still only about 15 pounds. I haven't weighed him in a while, but the last time I did he was still 14 pounds. I'm hoping that by now he is at least 15, but I'm not holding my breath. I was looking through all of his new clothes from his birthday. Some people who came (my cousins/aunts/uncles) hadn't seen Skyler yet, and bought him the typical 12mos clothes (so sweet of them, the outfits are so cute) and I was looking at them thinking well this he might fit into when he's three.. Sad thing is I am not even kidding, Chuck's youngest sister was only 24 pounds when she turned 3. All the kids in his family were tiny tiny babies. I on the otherhand was 20 pounds when I turned 1.

I'm glad though that at least he will grow into the clothes at some point. I'm really hoping the endocrinologist on Tuesday will say that it's just the growth pattern he's following is the same as his daddy's. But I kind of doubt it. I have the feeling we are in for an 8 hour blood test to see if he has any HGH. And if not then it'll be time to get some more drugs. On the bright side though, maybe then he will grow a bit.

Sorry for the length of this post it's been a while since I had a moment to catch my thoughts. Christmas this year should be fun, it'll be Skyler's first Christmas at home. Last year he was trapped in a plastic box in the hospital. Chuck has already strung up all the lights and we bought a tree. It's blue. We decided to be different. It's only 3.5 ft tall but we don't have a huge amount of space and it will be in storage for the rest of the year so no point in buying a huge tree. Skyler already loves looking at the lights. (Up close of course). I can't wait for Christmas with my baby, this will be our first real Christmas together as a family. Last year our hearts just weren't in it. He was on nasal prongs and so small that we couldn't hold him for very long. This year we have the CNIB Christmas party to go to, our work parties, parties with family, it should be fun!

My idea for Christmas presents since we're low on cash this year is to have Skyler make some creations with his finger paints. He loves to smear them around on paper, and this way it's handmade and from a baby. Who can resist that? Throw in a little box of chocolates or a hand crocheted scarf (made by me), and voila instant present. No one is going to complain that your gift was cheap if your baby made it right? Especially if he's blind. Haha oh I love using that one (in a joking way of course.) This year is going to be an odd one for me, as it's my first Christmas as a family with Chuck and Skyler, but also my first Christmas as the child of separation. My parents no longer live together so I have no idea how this is going to go. Wish me luck.

Anyway I hope you all are well, if there's still anyone out there in blogland. Let me know how you've been doing, catch me up. I've missed so much!

Learning

2009-11-25T00:39:00.004-06:00

Things have been hectic. Skyler's parties were good, busy, lots of people he got lots of toys and clothes. If you want to see the pictures from the birthday and a slideshow I made of his life go check out his blog.

As for yesterday I had my last Autism workshop and got my certificate for the completing it. It was another extremely long day and by the end of it I was just completely drained, but I did learn some new things. I even learned something about Chuck. For as long as I have known him he has hated gentle touches. I have this thing where if someone runs their fingertips down my back or my arm I am just in heaven. When I do this to him, he freaks out. He either has a full body shake (kind of like when you get a really bad shiver) or he jerks away and gives you a dirty look (which may or may not be accompanied by an earful). He also hates the feeling of certain fabrics on his skin, and won't wear his underwear if it has fuzzies in it. He throws it out and gets a new pair. Me I just don't care that much. So I have always kind of bothered him about it, I thought it was just him being picky and a bit weird. Also he is not opposed to nice big hugs and deep massage, as long as you use enough pressure he is happy to be touched. Which is apparently the way a lot of people with tactile hypersensitivity feel.

So last night when they started talking about tactile hypersensitivity and we watched a video of Temple Grandin talking about how she hates gentle touch, and will even turn her underwear inside out etc, a lightbulb went off in my head. I came home feeling like a big jerk, both the boys were asleep when I came in, so I waited until the morning to talk to him about it. When he woke up I explained to him what I learned and I apologized for always bothering him about it. I know the reason why he has it, it has to do with childhood trauma, not autism. Regardless I feel like I at least understand one more little quirk about his personality, and now I know some ways to deal with it too which is nice.

I also learned a lot more about Autism and how to help Autistic kids. Our little guy at my program is doing great by the way. Now that I am fulltime I work with him a lot more and I can see him learning new skills and just having fun which is so awesome. We're working a lot with sequencing and using the "First this, then that" approach with activities, and using picture cards to remind him of what we're doing. It seems to be working quite well. Anyway that is what I wanted to share with you guys.

Look How Far We've Come

2009-11-20T14:24:00.003-06:00

That's right, yesterday at 5:53pm my little monster turned one whole year old! And just like last year I'm posting about it the day after. We had a quiet birthday at home with him, Chuck made us a nice dinner and Skyler enjoyed it. He opened a present from aunty and let me tell you he loves ripping wrapping paper. I can't wait for tomorrow, because it's his first first birthday party, no that's not a typo. Sunday is his second first birthday party, if you get what I mean.

It`s amazing how far we`ve come.

(not pictured, the rest of his toys.)
(oh yeah tomorrow my living room becomes a Fi.sher Pri.ce catalogue, or possibly a To.ys R U.s)

Ghost Child

2009-11-14T02:15:00.003-06:00

You know that feeling when you aren't quite awake yet and you feel something or you think something that you later on realize is quite crazy? Well every morning for the longest time, in that moment before I actually wake up and reality sets in, I keep thinking I have two children. Every time Skyler wakes me up by crying I think "Uh oh I hope he doesn't wake up the other one." And sometimes as I'm falling asleep I think that they're both sound asleep in the bedroom. Not realizing that I only have one child sleeping in the bedroom. I know it sounds crazy, or like I'm making it up, but I swear I'm not. For as long as it's been happening I've been brushing it off, but I'm starting to think more about it. Logically and while I am actually lucid I know for a fact that I only have one living child, but in those moments between waking and sleeping I know that I have two. Or at least my subconscious feels that I have two. It's actually getting to be kind of disturbing because as I'm falling asleep or waking up I find myself worrying about a child who is not even with us. Though I suppose if I am thinking of her this much, she must be with us in some form or another.

Sorry for the ramblingness of this post, it's 2am and I've just woken up and not been able to fall back asleep yet.

Not Enough Hours in a Day

2009-11-11T22:44:00.002-06:00

Sorry it's been a while again. I'm not feeling nearly as ranty as before. More of an update than anything. Monday was a 15 hour day for me. I start work at 7, which means I leave my house at 6:30am, I have a break between 1:30 and 3:30, but my work is so far from home that I usually just stay there and keep working through my break. And then I'm done at 5:30, but Chuck works until 6 so I stay because he is my ride home obviously. So Monday after my usual 12 hours out of the house I had to go to an autism workshop with a coworker. It was good, I'm glad I went, I learned a bit about autism and how to help autistic children make social connections with people, which is very difficult in most cases.

In other news, my lesson plan is going well. The kids love dark tag (a game my friends and I came up with as kids, one person closes their eyes, we turn down the lights and the person who's it tries to find us by listening to where we are, etc) and they've been learning about what it means to be blind and that blind people are very capable. I hope the ASL part goes just as well. Anyway I have been exhausted the last few days so I am off to bed. I hope my Canadian friends had a sombre remembrance day. And I'm not sure when the American equivalent is, but I hope you have a good moment of reflection and take the time to remember those we've lost to violence and war..

Ranting & Raving

2009-11-08T10:09:00.006-06:00

You might want to skip the last half of this post because it's basically one long vent. So if you don't want to read that part, just stop when you get to the picture of Skyler.

So I realized today that I forgot to tell you guys what happened with his appointment with the NP and the gasping thing. She thinks it was just reflux from eating too much, which is what it sounded like to me too. She said if he keeps it up though to schedule an appt with his paediatrician. So far so good, no gasping the last few days whatsoever. I'm thinking we may be in the clear on that one, hopefully.

Now on to the bad news. He's not gaining or growing the way he should be. That's right folks my (almost) one year old weighs a grand total of 14 pounds. The funny thing is when people see how small he is and I tell them he was premature they always say things like "Oh so-and-so was premature and he's 6ft tall now." Yeah because that's what I'm worried about. My child has hypopituitarism and is prone to dwarfism because he can't produce his own human growth hormone, I'm not exactly shaking in my boots because being born two months early is going to make him a shrimp forever. Even if he had been born right on time he would still be this tiny, because his body just can't make itself grow. Once it's done using up all the insulin and whatnot that it uses to grow for the first few years well, then it's onto the manufactured HGH. Which it seems like we may have to do now.

I'm a little freaked out. It's just.. this is too early. He was supposed to be able to grow on his own until around 2 years old. That's what the doctors estimated anyway. It just seems like it's too soon. Chuck and I have to bring our growth charts from when we were babies to his endocrinologist to see if he's following our growth patterns. We pulled out Chuck's and he was only 18 pounds at one year old. So he was pretty tiny too. I'm not sure what mine says, I still have to go to my mom's place to find it. I don't think it's going to matter much anyway though. His endocrine appointment is Dec 1st. The next step after that is an 8 hour long blood test. They test and retest and retest and retest his blood for HGH because it's hard to detect. Our bodies use up the HGH almost as soon as it's made. So hopefully they find some in his system or else it's more drugs for my beautiful baby boy.

HGH has to be administered once a day 6 days a week by needle, right up until he stops growing (around the time we start the testosterone for puberty or just after). I'm not exactly looking forward to giving my baby a shot each day. I know he needs it, and I know I will do it. I just think this sucks. I'm not one to feel down like this, for the most part I think I'm pretty positive about everything to do with his special needs. It's just this is hard for me, I've always been relatively against drugs of any kind, I think our bodies should be able to for the most part take care of themselves. So the conundrum of having a baby whose body can't take care of itself.. I worry about these drugs he has to be on, what about side effects? I mean you can't take something for your entire life and not have side effects. The worst part is I know that that just has to be a part of his life. Because he needs them to live and grow and thrive. It's kind of a sucky feeling.

My supervisor was there when I called Chuck to see how the appointment went and I told her after I got off the phone about the whole HGH thing. She knows he's special needs of course and about his NICU thing. I think she was trying to be comforting when she said "There's always something, even with kids who don't have special needs." I'm pretty sure this was her way of trying to make me feel less alone or something. But honestly, while I think it's true there are always things to worry about even with a typical child, I don't think it's the same. Maybe you have to take your kid to the dentist to get a filling. Sure that sucks, but you don't have to give them a needle every day just to make sure they grow, or jump up and adjust the dose of pred everytime they sneeze. Or freak out because you forgot to give your kid his thyroxine two days in a row. A mom of a typical kid might feel horrible because she was tired, and turned her back for a second and the baby fell and bumped her head. But when I am exhausted from being away at work 12 hours a day and I forget to give him his meds he could have a seizure or his body could shut down. Obviously we hardly ever forget to give him his pred, but sometimes we're a bit late. The point is that this is what I worry about. I don't think it makes me a better mom than anyone else, but I also honestly don't think it's fair to say that someone knows what I am going through when their child is "normal" and mine is about to do an 8 hour blood test, and then likely start taking yet another drug each day.

Okay, phew. Sorry, I didn't intend to rant nearly that much. Apparently something was pent up inside. Sorry I flew off the handle there. I just had to get that out. I'm done now, I think I feel better.

My First Lesson Plan

2009-11-07T17:04:00.001-06:00

I just made my first ever lesson plan for the week. Monday and Tuesday we'll be talking about blindness and Braille, Wednesday is Remembrance Day, and then Thursday and Friday we'll be doing deafness and ASL. My supervisor already approved my lesson plan, I just have to put it into action. I'm glad we have wednesday off. I wanted to go visit my papa in the cemetery since he was in both the second world war and in the korean war, but I think the military section at the cemetery will be too busy, especially since he is buried in the largest cemetery in the city with the largest military section. So I think we may go this weekend to bring him his poppies like we do every year. I wish I had more to write about, I just can't think right now.

School Woes

2009-11-04T18:38:00.003-06:00

Sorry it's been so long. Halloween was great, we had a wonderful time. Hope yours was fun as well. Since last night Skyler has been randomly gasping, which is rather alarming. We made an appointment today to take him in to see his NP tomorrow first thing in the morning. I'm going to have to miss the appointment, which I'm not happy about, but unfortunately I have to work. He's got a lot of boogers it seems, I'm thinking he's just sort of choking on his snot so I'm hoping it's nothing major. Of course we are checking to make sure he's not turning blue or not getting enough air. The thing is these gasping episodes are very short, a few seconds only, and not extremely frequent, it's just scary. Fingers crossed that it's not some horrible respiratory problem or the scariest yet H1N1.

Work/School has been crazy. I've been so busy with my kinders, we have a few who are very hyperactive and some who just don't like listening. So we had a few serious discussions today about respecting our teachers and our friends and how to listen nicely when it's another person's turn to talk.

We also had an incident today where a child (in grade 3) didn't know they were supposed to be going to our program after school and went to meet their parent outside, but go figure, parent wasn't picking them up and so we were frantically searching around for said child and calling parents asking "is your child coming to our program today or have you picked them up?" which we didn't realize mom had custody during certain months and dad has custody during other months. So now dad is mad because he thinks mom didn't communicate well enough with the child and they're doing the whole custody battle thing. /sigh. Anyway we just did what were supposed to do and called the numbers listed on the contact sheet. Mom wasn't mad at us, and actually thanked us for doing what we were supposed to do. But I can't help but feel a bit bad now, I don't want anyone to lose custody of their child.

Today we had another CNIB OT appointment, and our OT has someone in from Saskatchewan's CNIB children's program who is learning about our province's program so she brought her along to show off her favourite family (us of course. Haha.) okay maybe more like favourite baby, it was all about Skyler and his cuteness. He showed off of course, and our OT is very pleased with him, he is lifting himself up while on his stomach very well, and he's making eye contact a lot and also turning to sounds and then paying attention visually. It was a great visit as usual and we scheduled our next appointment with her for his birthday!! I'm excited, I would be happy have her visit on his very first birthday. She is our favourite person on his team of professionals. Though his opthalmologist and neuro come in a close second/third. I think we see her so much more than the others and that's why she's our favourite. Skyler even loves cuddling her.

I just got back my fourth assignment from Hadley and I got an A+. I love learning new things about child development especially relating to blind/visually impaired babies. Anyway that's all for me, I hope you all are well.

Happy Samhain!

2009-10-31T09:30:00.003-05:00

Blessed be, and happy halloween! Today is Samhain*, and we're celebrating by going to the cemetery for a picnic and some grave rubbings to honour those we've lost and spend some quiet time with them, remembering how they touched our lives. Samhain is one of my favourite sabbats and I can't wait to celebrate. Skyler and I already had an early morning ritual. Which I should explain is not some sort of crazy thing where we sit in a circle chanting and sacrificing animals. Basically we sat down in the bedroom with some items that belonged to our loved ones and we talked about the people that came before us who died, my grama, my papa, his sister Sophie. Skyler babbled too and gave his input. We talked about how we missed them and how they are always a part of our lives. We gave our thanks for another summer past and all the good things in life, and the hard times that we've overcome, and then we had breakfast!

Tonight we'll probably take him to my moms, my dads, and Chuck's parents just to show off his costume and maybe get some treats for the grown-ups. Other than that it will likely be a quiet evening. Living in an apartment I don't expect we'll have any kids trick or treating. Which sucks because it's so fun to give out candy or to go trick or treating, but I think Skyler is just too little for that still. Maybe next year, hopefully he will be walking by then and can participate and have a bit more fun. What are your plans for halloween? I hope you all have a good one this year!

*In the link, if you scroll down to the bottom-ish where it says Neopaganism it gives you some idea of how Wiccans celebrate it. :)

Magic Baby

2009-10-28T19:56:00.005-05:00

I don't know how many times I have already said it, but I love our paediatric opthalmologist. Chuck called his office today, after he spent forever on the phone with the tax people. He faxed over the forms to the opthalmologist's receptionist and also the letter we got from the government saying that we didn't qualify. The doctor himself called us back at 5pm (it was amusing because we were on our way to the CNIB for the halloween party) and he was mad. Not at us, but at the stupid situation. He said it was ridiculous that they expected him to get an accurate diagnosis from an infant and that we need the benefit because we are doing everything we possibly can to help our son's visual development. He wanted to know if there was a number he could call to give them a piece of his mind. He said he will fax us back the form saying whatever it needs to say for them to approve us. Yay!

On monday I registered for another ECE class, which I honestly couldn't afford, but I had to do it because I now am classified as an ECE in training, which means a raise and full time hours. Which is a huge plus. I'm going to miss the extra couple hours with Skyler, but I am finding the day goes by quickly in the kinders room. I am getting used to having all these kids calling my name everyday. Asking me to do up their buttons, tie their shoes, settle disputes, look what they can do, and on and on and on. I worry about them wearing their mittens and hats and jackets when we go outside. Today I was done work and I went back to the room to sign myself out, and I saw one of our kinders had left her mitts in the room so I went back outside and gave them to her. I just couldn't stand the thought of her little fingers freezing. I guess I am a mommy at heart.

The CNIB halloween party was a blast, we met more parents of blind kids obviously, we shared stories and promised to meet up again at the Christmas party. Everyone loved our cute little wizard of course. I asked our CNIB OT if she knew the kid we met at the pool, and we described him, she confirmed that she did indeed know who he was and that he had been at the last Christmas party. I hope we'll see him at the christmas party this year! There were lots of activities for the kids to do at the party, including crafts and a tactile room for the kids (with bowls of jello and pudding and grapes, just like a normal halloween party where they blindfold people or turn out the lights except we didn't need the blindfolds for the kids at this party ;P) And there were tons of snacks and goodies. I made a foam ghost with Skyler (I let him play with the stickers and he actually liked the sensation of them sticking to his fingers) and I made a skeleton to decorate the apartment or the daycare centre. Whichever.

And now what you have all been waiting for, my little wizard!
(oh and don't mind the pjs under his robe hehe)

Not Enough

2009-10-28T00:55:00.003-05:00

So we got a letter from the government today. Apparently our son just isn't blind enough for them. Which means we don't qualify for the disability tax credit. Isn't that lovely? The letter states that because he is such a young age that the opthalmologist cannot ascertain with 100% certainty that he is legally blind (20/200) he doesn't qualify and we can reapply once we get an accurate diagnosis of legal blindness. Oh and he is on life sustaining drug therapy, but that doesn't qualify either somehow. Life is wonderful. We have to pay out of pocket for all his drugs and therapies that he needs to live and thrive. Of course I do this gladly because I love him more than life itself, but honestly Canada, this is ridiculous. I don't pay taxes out my nose for our healthcare system only for you to tell me that my son is not disabled enough to qualify for any benefits.

On a much more happy note, but also related to his blindness, (which I swear he is actually blind/visually impaired no matter what the government thinks) tomorrow is the CNIB halloween party. I have been looking for an entire month for a cute costume that would fit him, and I have found absolutely nothing. So today I got the brilliant idea that hey, I have a lot of fabric just lying around in my craft closet, and a sewing machine.. You can see where this is going. I thought about making a witch costume, but he is a boy and I can just see how that conversation would go with random people. So what's the next best thing? A wizard! I spent the last 3-4 hours cutting and sewing my little fingers off, and let me say for something I threw together last minute without a pattern or anything it's not too shabby at all. I'm kind of proud of myself. Anyway I shall have to get a picture of him wearing it tomorrow. Hopefully I will find the time to make him a little wizard's hat before the party. I've been working 8 hour days lately so I haven't had much time for anything.