Monday, February 28, 2011

"retarded"

This word didn't used to offend me. And it still doesn't really...unless you use it to describe my child. I mean, she IS retarded, by definition. But, "special needs" just sounds so much more friendly. And we use "special needs" or "special" the same way we'd use "retarded" so what's the big deal?! I don't know.

The word "retarded" sounds so negative, I guess. I know when I use it, it's not to point out someone's positive attributes. Like, we watched that movie, "Dinner with Schmucks" and I asked Brian about Steve Carell's character, "is he supposed to be retarded?" I could have said "special," but "retarded" was more the word I was looking for.


However, when I'm talking about my own child, "special" seems so much more appropriate. Maybe it's because I want to focus more on how special she is instead of how behind she is. Maybe it's because it's more important to me what she CAN do and what she IS (like alive) than what she can't do (yet). Maybe it's because my heart breaks a little everytime I realize that the older she gets, the more she's going to realize that she's different than other kids, and she's going to get made fun of. She'll probably even be called "retard." I guess it'll be important to teach her what "retarded" means, and that it isn't necessarily a bad thing...it just makes you more special. Because she is special, and anyone who takes the time to get to know her realizes that.

Saturday, February 26, 2011

Sadie's first swimming lesson

We met the most awesome lady today. Her name is Lana and she owns SwimKidsUSA. She was the teacher for Sadie's first swimming lesson. Why was she amazing? Because she loved Sadie. And I love people who not only know what Sadie's all about and are not freaked out by it, but they love her the moment they lay eyes on her.

From the moment we walked in the door of this place we were greeted with warm smiles and excellent customer service, knowing that they specialize in special needs kids, we kind of had an idea we wouldn't be stared at or made to feel like we don't belong. These people were used to special kids and they treated my special baby with the same attention as every other super cute child that came through the door...and there were a lot of them!

But Lana, she was something special. She told me she has a Masters in Special Education. When I signed up for lessons, her staff told me that she developed a whole special needs swimming curriculum. And she told me she has a special place in her heart for special kids. I liked her immediately. And I could tell she liked us.

She really worked a lot with Sadie's vestibular system, bouncing her in the water and giving her verbal cues before doing anything. We sang a lot of songs, and we moved around in different ways in the water. She understood when Sadie became overstimulated and knew exactly why. So, she backed off and we did different stuff. And when Sadie got the point where she was almost completely a disaster, Lana took this bucket that had holes in the bottom and let it "rain" on Sadie, knowing that that would calm her down. She even suggested that we come during the week and "practice" to get Sadie used to the sounds and things in that environment that could be overwhelming to her when she's not used to them.

So, we found this place by purchasing a Groupon, which gives us 4 Saturdays of lessons. If we decide to continue it's $70 a month (which isn't bad, really), but as she gets older, it'll likely get more expensive if we continue. However, Lana told us they have scholarship programs...that they like to reserve for special needs kids especially. The only hindrance right now is that it's a 30-40 minute drive to get there, but it's REALLY close to where we are looking to move. So we may continue once we find a house and move.

And, here's a video for your viewing pleasure of Sadie "swimming."



video

Wednesday, February 23, 2011

ABM/Movement Therapy

Last weekend Sadie did an intensive therapy session with Michelle at Movement Lesson. We've seen Michelle a number of times in the last 6 months or so, but when we asked her she said she's really seen the most progress not when children come weekly, but when they come 8-10 times, twice a day, for 4-5 days. So we scheduled to see her over President's Day weekend. 9:00 and 3:00 Friday-Monday. It was a lot of car riding. Sadie did a good job. It wasn't until our very last session that she had to take a nurse-nap break. When we first started going, Sadie needed this kind of break every session.

I've talked about this kind of therapy before, so I won't get into that. (you can read about it here) But I do want to talk about Sadie's progress through this therapy. Michelle worked a lot on her back. Many things are related to our spine and its curvature and how well it's supported. A lot of Sadie's inability of holding her head up comes with the rolling of her back. It's like she is a little potato bug and when she gets tired or mad she just curls up! Michelle spent a lot of time teaching her how to sit up straight and hold her head up high.

She focused a lot on sitting with Sadie. She worked a lot with her hips, trying to release the tightness there that keeps her from being able to support herself. By about half way through the weekend, Sadie was sitting (supported, of course) cross-legged! She also spent some time making efforts to uncurl Sadie's feet. It's interesting how we take something like sitting for granted, but for Sadie it's so hard because she spends so much time curling up like a potato bug! But sitting is so important. When Sadie can sit, it will open a world of possibilities for us...in the tub, in her high chair, in the stroller, in the grocery cart at the store, even just being on the floor playing with toys! I am really anxious for Sadie to be strong enough to sit.

We have noticed a lot of improvement in Sadie's trunk stability after these 8 sessions with Michelle, and so have Sadie's other therapists. All of them have really felt like she can hold her head up better and for a longer amount of time. Michelle also did this thing with Sadie where she would rock her back on her back, with her feet over her head, then rock her forward and use the momentum to propel her into either sitting or even standing. I had never seen her stand so straight and so tall before this weekend. It was obvious she was learning to use those core muscles to straighten, intead of curl, that spine.

I think though what has improved the most since seeing Michelle for this intensive therapy session, is Sadie's vision. Weird, right? It's supposed to be movement therapy. But it's neurological, which is the root of her visual impairment, so it effects and improves this area too. Sadie's vision has been "on" more and more during the day. She seems to be tracking objects better when in front of her face, and she is able to fix on something for a longer period of time. She seems to also be better at using her vision and doing something else at the same time. Because her brain function is limited, it's hard for Sadie to do two things at once...like scream and hold her head up, or use her vision and swallow her food, etc. However, she's been using that vision this week while on her tummy holding her head up, in sitting position, while eating, while nursing, and in the car.

Here's a video of what Sadie looks like when she's using her vision. You'll notice she's trying really hard to focus on me, you can tell by the flutter of her eyelids. She is so concerned with trying to see me she can't even pause to give me a smile...usually once she focuses on me, she will grin from ear to ear.



And finally, after seeing Michelle for these 4 days last weekend, we've noticed a change in Sadie's attitude. I don't know if it's part of the neurological maturity process, or if she's gained more confidence in herself, but she has learned to keep it together. Some might call this self-soothing, we call it not losing control. Sadie gets upset, frustrated, overstimulated, etc. and she cries...because this is how babies communicate. In the past, if whatever the issue is isn't resolved in a matter of seconds, it will turn into inconsolable screaming. Insert car screaming here. But just this week, we have noticed that Sadie can get over it on her own without losing control, and we love this new development...mostly because it may lead to the end of car screaming, but also because we are seeing our little helpless screamy baby turn into a child who is realizing that she can communicate with us.

Sunday, February 20, 2011

The Sadie I want to keep forever

When I'm up with Sadie for hours in the middle of the night (like I am right now), I wonder if she'll go back to sleeping all night, or if it's going to be like it used to be. When Sadie was really little, I used to spend 3-4 hours every night sitting up with her. I watched a lot of Netflix, but I was pretty much a zombie all day the next day. I could barely function. It was unsafe for me to drive. There were a couple of times I'd be in the car going somewhere I'd been a hundred times before, but all of the sudden the scenery looked different and I couldn't remember how I'd gotten to where I was. It was a little scary.



The other day I was talking to a friend about Sadie growing up and how exciting it's been to see how far she's come already. And I told her how everybody always said, "enjoy her while she's little, 'cause you'll miss that when she's big." I told my friend that nobody could pay me enough to relive those days! I don't miss them at all! No sleep, never a break, holding Sadie all day...no way do I miss that!



Is that sad that Sadie's tiny-baby memories are so full of negative emotion? Maybe for you it's sad, but for me that's just the way it is. I don't feel sad about it at all, I just feel glad that we're through it and (fingers crossed that tonight is just a weird one-time thing) we never have to go back!



I feel like this Sadie I have right now (when she sleeps through the night) is the Sadie I want to keep forever. She is suspended somewhere between babyhood and toddlerhood, she's such a big girl in a lot of ways, but also still such a baby. She's getting big and somewhat independent (meaning she doesn't need ME all day), but she still nurses and she still fits in the tub with me, and those are my favorite times together. This is the Sadie I will miss as she gets older.



I am so glad we've made it this far. When we think about our family 6-8 months ago we never could even comprehend Sadie sleeping all night, let alone in her own room!! And eating so much food? We still don't see a light at the end of the car screaming tunnel, but having come so far in so many other areas, I have hope that we'll get there. And some day we'll take sleeping through the night for granted...maybe.

Saturday, February 19, 2011

Long Time No See

So, I know I haven't written here in a long time. I had this goal at the beginning of the year (no, not a New Year's Resolution) that I was going to write 5 posts a week, yeah right. My job has taken over my life. I didn't realize how much of my day Sadie took up until somebody else started demanding that time. But I like my job, and I'm not complaining or excusing myself, just explaining.

Some of you might say, "it's online school, how much is there really to do?" A lot actually. For priding themselves in allowing a "flexible" schedule there is sure a lot of my week that isn't flexible! I have meetings and live classes, and I have to make phone calls and chase down the kids who aren't working. Then there's the flexible part...grading and creating powerpoint presentations for the live classes. This usually gets pushed farther and farther down my to do list and then I end up working all evening...which I don't mind doing, but then bloging doesn't happen, and Brian gets bored, and things don't get cleaned. But a lot of my day I get to spend with Sadie, so I'm busy, but not unhappy.

I have all these blog-post ideas in my head that I want to write about, and I often draft something in my head while I'm out running, but by the time I walk through the door it's like everyone needs me and is so relieved I'm home that I quickly become engrossed in "mommy duties." And then I forget what I was going to write about.

Tonight, however, I'm feeling like a bad mommy, like a failure. And no matter how many times Brian tells me I'm not, I still feel like one. So, I need to write about it. Sadie needs to gain weight, that's what we were told at her 12 month appt (which I don't think I even wrote about!!!) so I have been working so hard to get her to eat. I am tracking her food, I am counting her calories, I am doing everything in my power to get her to eat 3-4 times a day, and it's a lot of responsibility. I am the one who prepares her food. I am the one who feeds her. I am the one who has to take her back to the dr. and be there when they weigh her and have the conversation about seeing a G.I. dr. And ultimately I am the one that will take her to more dr. appts. And I will probably be the one they tell first when they say she's going to need a feeding tube. So, when she doesn't eat enough, or, like tonight, when I force 1 or 2 bites too many and she pukes it all up, I feel the weight of that, and I feel like it's my fault, and I feel like I've failed as a mother.

It's not as often, but sometimes I do still wonder what life would be like with a normal baby. I'll probably always wonder, not so much anymore because I wish things were different, but because I just have no idea what that would be like. I read my friends' facebook posts about going to the science center, or taking first steps. I see pictures of first smiles and sitting and crawling, and sleping, and I wonder if they read my posts and think what it would be like if they were me. Probably not. I doubt they realize how badly I want what they have. I want to take Sadie to playgrounds and splash pads. I want to watch her learn how to crawl and sit and eventually walk. I want to brag about the yummy cookies we baked together or the cupcakes we decorated. I want to show off her craft projects, and write about the funny things she says and does. And I think I'll get all this...I'm just still wading through the muck of unknown, seeing all those posts is like being 10 years old and watching someone else open all my Christmas presents, but knowing I have to wait until next year before I get them.

I don't really know what I'm trying to say. I guess that we've come a long ways, and I don't wish to go back. This has been hard. And I'm sure in another year I will look back again and say the same thing. Does it get easier? Will the car screaming ever stop? Will eating continue to always be a struggle? When will she sit up? When will she stand? Will her vision ever be good enough that she can enjoy the movies or the science center or the playground? Nothing is guraunteed, and sometimes I don't feel strong enough for that reality.

Right now I guess I need to just live in the present. It's good to reflect on the past to remember how far we've come, but as for the future, I should probably just let it come as it will. So for now I will continue to live vicariously through my friends on facebook, holding tight to those dreams I have of doing the things they do. And right now I will be happy that Sadie doesn't need a feeding tube. And I will rejoice in the fact that I have a job that I like and I work with awesome people. And I will do my best to blog more often.

Monday, February 14, 2011

Bounce-a-stan

Sadie and I have been discussing wonderful places we'd like to be when we're in the midst of a cuddle moment. We recently discovered a magical place that only exists in the toughest of times when spirits need to be lifted.

Bounce-a-stan is a wonderful place where beds are made of arms that hug and play time is full of bouncy chairs that sing fun Raffy songs. There are dangle toys that make noise and are of simple contrasting colors that fascinate wonderful adventurers.

There are fruit trees all containing boobie fruit. There are lots of yummy flavors like prune, butternut squash, peach, and pear. The trees always sway in the wind just a little bit in order to make fascinating rustling noises that can entice tender babes.

The draw back of bounce-a-stan is the neighbor of scream-a-stan. Scream-a-stan is much lower in elevation than bounce-a-stan and if one is not careful, one can fall down into scream-a-stan with the slightest mishap. There are treaties between the two places, but relations aren't dynamic or friendly. Often times exchanges must be made in order to retrieve an errant citizen of bounce-a-stan.

Furious bounces, blanket swings, or impromptu outside sessions are required in order to appease the powers that be in scream-a-stan. Once their necessary demands have been met, there is an uphill climb back into bounce-a-stan. When the border has been crossed back into the superlative shire of bounce-a-stan, all is well again.

Sadie told me that she wanted to share the story of bounce-a-stan. It is too majestic to keep a secret.

Sunday, February 6, 2011

baby steps

Most parents note milestones in their child's life. At our house, the baby steps are milestones. I thought it'd be nice to note some of the things Sadie has achieved:



1-19-2010 Sadie was born

1-24-2010 we removed the breathing tube and Sadie breathed on her own

1-26-2010 Sadie came home

2-3-2010 Sadie breastfed for the first time

2-17-2010 Sadie no longer used the feeding tube

2-14-2010 Sadie started cooing

4-2010 Sadie graduated from hospice

5-6-2010 Sadie flew on a plane for the first time (to OR)

5-18-2010 Sadie started really smiling

I don't remember a lot of June and July because Sadie wasn't really sleeping...and neither were we

6-29-2010 Sadie took her second ride on an airplane to celebrate her cousin, Attilie's first birthday

8-2010 Sadie was declared seizure free

8-2010 Sadie started sleeping through the night (or at least not waking up for 2-4 hours in the middle of the night anymore)

8-2010 Sadie took her first roadtrip to CA and slept in a hotel

9-6-2010 Sadie started tolerating solid food and eating it regularly

9-19-2010 Sadie was done taking phenobarb

9-30-2010 Sadie had her first day with no crying (not even in the car)

10-15-2010 the bouncy chair broke

10-17-2010 Sadie got a new bouncy chair

10-18-2010 Sadie's first day without mama for 7 hours

10-29-2010 Sadie had her second day with no crying

12-3-2010 Sadie started sucking on the pacifier

12-9-2010 Sadie fell asleep for the first time sucking on the pacifier rather than nursing!!

12-13-2010 Sadie rode in a plane for the third time to spend Christmas with grandma

12-15-2010 Sadie got her first cold and made everyone miserable (and sick)

12-21-2010 Sadie got her ears pierced

12-30-2010 Sadie showed us she's able to drink from a sippy (sorta)

12-31-2010 Sadie spent New Year's Eve screaming

1-4-2011 Sadie met Zahira and fell in love

1-10-2011 Sadie spent her first day with Zahira

1-11-11 Sadie's first tooth cut through the gums

1-15-2011 Sadie had her first birthday party (and her second tooth cut through)

1-16-2011 Sadie watched her mama finish a half marathon

1-19-2011 Sadie celebrated her first birthday

1-23-2011 Sadie slept (with mama) in her own bedroom

1-26-2011 Sadie slept in her own bed in her own room all by herself all night!!

1-28-2011 Sadie got her hand in her mouth without any assistance

Saturday, February 5, 2011

Sleeping...again

Sadie turned 1 on a Wednesday, and the following Sunday we moved her crib back to her own room. It was a big step for us, but I felt like it was now or never. My body was tired of not being able to move all night, I would wake up stiff and grumpy. We were constantly on alert of making too much noise or too much movement. It was time to be done.

We'd been working on getting her to fall asleep in bed, and she'd been doing a pretty good job of it, so I bit the bullet and just did it.

The crib has been up against our bed for the past 8 months with one side removed. So, I just repeated the set up with the twin bed that is already in Sadie's room. I mentally prepared myself to sleep in there for months, Brian was excited because that meant he could actually have the whole bed to himself. But by Wednesday that week, Sadie was doing so well on her own that I actually went to bed with Brian.

I layed in bed that night unable to go to sleep. It was a weird feeling to have Sadie in another room...on the other side of the house. Of course I had the baby monitor next to my head, and I listened as hard as I could for at any sign of awakeness I was ready to rush in there and rescue my baby. I kept thinking that the last time we slept in a room without Sadie was the night we decided to pull her plug and say goodbye. We held each other and cried for a long time that night. That was the last night we spent at home without her. That night was over a year ago.

Sadie slept all night that night. 12 hours. When I woke up that morning I went to check and make sure she was still alive. I was worried. But I slept better than I had in a year.

Since then she's been doing pretty well. She goes to sleep in her bed, with lots of help, but in her bed (baby steps). And she stays asleep until 4 or 5 in the morning. I've learned that she's probably just cold, it's been in the 20s at night here, possibly the teens even. So, I go in there at the wee hours of the morning, and I pull her into the twin bed with me, cover her with blankets, hold the paci in her mouth until she's back asleep, and then I go back to bed for the last 30 or so minutes of my night.

The nicest thing has been having mornings to myself. I love the morning, and I love it even more when it's uninterrupted. Nobody talking to me, no baby needing me. Just me getting a lot of work done.

This has been a huge milestone not only in Sadie's life, but in ours as parents. I'm really proud of our entire household in how far we've come with this sleep thing. Still, I realize there will always be one more thing...if only she'd - what? Nap in her bed? Eat food without complaining? Sit unassisted? Go to sleep without help? We've come a long ways, but I realize that no matter how far we've come, there will always be a long ways to go.

Friday, February 4, 2011

12 month portraits

Last Sunday we scheduled an appointment to take Sadie's 12 month portraits at JC Penney. We've done all her previous portraits there and she's been surprisingly good each time. We don't try overly hard, we don't get greedy. We get in, get 2 or 3 good smiles, and get out. We're probably the only people who actually are done in the time they allow for our appointment. Last Sunday was different. Sadie was inconsolable. We hit unnecessary traffic on the way there...you know, the kind where the freeway goes down to one lane only for about half a mile then opens up again and there is no sign of road work happening anywhere. And by the time we got there Sadie was a mess, and she wouldn't calm down either.

The girl was nice, but I did have to coach her a little. They are used to normal babies, babies who smile on cue and you can take a picture. Not my baby. We had to break out the big guns...blanket swinging. We told the girl, as soon as we put Sadie down just start snapping. It's okay if she's not smiling, chances are you'll get a good one anyway. Plus she has like 25 frames or something, we were not going to use near that many. We did this twice, got 3 or 4 we were happy with, and moved on. Here are my favorites:



Big girl, right? So, as I was picking out the ones we wanted to actually buy, Sadie fell asleep, of course. Then she was all smiles as we were leaving the store and didn't cry a peep on the way home. That's my girl!

So, this morning we tried something different. Through a connection, I learned that a lady named Joanne is trying to promote her photography here in Arizona so she is doing free shoots in return for good publicity. I like deals like this. She came over today and took some more pictures of Sadie. And Sadie wasn't much more cooperative for her. Luckily, Sadie is so pretty it doesn't matter. I'm her mom, I have to say that, right? But it's true.

You can see some of the pictures Joanne took on her blog here: Amiciphotoblog
(if you're viewing this post later, you can search for Sadie's blog post, it's called "just special...")

I can't really tell you which experience was better since they were both pretty horrific. However, I am more please with what Joanne was able to produce. Maybe it was the setting, maybe it was her maturity, probably it was her ability to capture the real Sadie instead of trying to pose her in a studio. I don't know, but I do wish I could afford to take pictures this way for all her milestones. Maybe as we grow as a family, we'll call Joanne again.