by Sarah | Sep 17, 2010 | All About Kennedy, All About Learning, All About Me, All About Molly, Crap, Random
On occasion the random bullet-filled post is fun. Guess what you get today? The virtual grab-bag of crap…I mean, the bullet-list…so much less defined than a bucket-list 😀
* Riley got sick this week. I called her school on Monday at 10:45AM. Told them her name, her teacher, that she was in PM kindergarten – and said she was sick & not coming in. 2 hours later the school called wondering where she was. SOOOO not working in their favor.
* On that note, I have a copy of a withdrawal letter for her drafted. It’s not set in stone, but we’re meeting w/ her teacher on Monday. Might be an ‘exit interview’ to get our ducks in a row. Informational “what is happening in class” and “this is what’s happening at home” type of meeting. Not sure which way the pendulum will swing after that.
*Our town had it’s street fair this past weekend. Somehow Angel managed to get a pingpong ball into a little fishbowl TWICE. So, “Pingu” and “Nemo” are the new pets around here (pictures to follow soon). If they survive the week I’m going to need to get them a real fish bowl. Right now they’re managing, but I don’t have any proper materials so the water is getting filthy fast. Changing it out daily is not on my list of good times.
* The new season of GLEE is this coming week! YAY. Fall shows make me happy. GLEE, ANTM, Bones and Big Bang Theory I’m anxious to see again (okay, ANTM is already on, YAY). I’ve started watching Hellcats (don’t judge)…and I’m really looking forward to No Ordinary Family, Sh*t my Dad Says, and Blue Bloods (hello Donnie Wahlberg *sigh* – and my NKOTB love goes on – again, don’t judge, you know you loved them too).
* Speaking of shows…oh, how disappointed I am in True Blood. Alan Ball really took the show WAY off course – and BORED THE CRAP out of me this season. When you fast forward through 3/4 of the finale because you don’t give a sh*t about any of the characters – you know it’s bad. Shame on you, Alan Ball. SHAME ON YOU.
* I’m knitting again.
* And (sort of) writing again…more like editing my book based on some feedback I got. Once again I have confirmation from all that have read that my first chapter is great – but I’m still not getting my foot in that door. Oh well, I have a partial out once again (slightly rewritten from what it was), and I’m waiting to send out more until another time. At this time of year I stop pressuring myself to write so much, because it doesn’t flow as easy for me and there’s too much going on.
* Because of JENNIFER, I’ve started watching LOST. Yes, I’m WAY behind the ball, but so is she…and she mentioned it being on Netflix instant-play (which I’d noticed too) and commented that because she was late in watching she had no one to watch with. So, now I’m just about through the first season (would be completely but illness sent me to bed EARLY)…and annoyed at how hooked I am. Simple curiosity has me glued to my screen.
* I have more reviews coming. This will not turn into a review site, but some offers look interesting and I’m taking them when I can. At least one will go on my other site because it’s for a book, but occasionally you’ll see them here too!
* Did you know that there is now LESS than 100 days until Christmas? At the time of this post there will be 98 days until Christmas. Hey, don’t shoot the messenger! It’s a simple fact. How much shopping do you have done? I have probably 1/3-1/2 done already.
* I’ll shut up now. More random posts in the future.
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It wasn’t intentional, but this fits into the theme, so I’m tying it to Friday Fragments:
by Sarah | Sep 3, 2010 | All About Erik, All About Molly, Autism, Crap, Fatherhood Fridays
This is not our first Fatherhood Friday. It’s just been a long time since Archie stepped up to this plate. I asked him to write a post on this subject, and have asked him to try to continue writing posts as time/inspiration allows. It’s always nice to get the other perspective from time to time 🙂
I’m writing this for a second point of view on our concerns for our daughter who has just started school.
I would like to say first of all that although my wife and I don’t agree on every aspect, I love her and respect what she has to say. No exceptions. I love our kids the same way, with no exceptions. Maybe I love them in different ways than each other, but no more or no less than the others. This will be about our middle child, Riley.
I knew the day would come where Riley would be old enough to go to school. My wife championed homeschooling, while I am a public education proponent. We both had sound logic in our choices, but eventually one of us would have to give way. Being small and comforting, the h/s milieu would provide stability and support as well as routine for Riley, as she loved things to be repetitious and consistent. Public school would give her interaction with other kids, lots of them, and would help her to mainstream, just be a standard kid.
By sheer persistence, I wore down Sarah to the point she would go along with me, albeit unconvinced I was making a good decision for Riley. So, she went to school.
Within the first few weeks, Riley lost her ability to remain calm. At school, the excessive noise(holy god, kindergarten is insanely noisy), the shuffling of many small bodies, the closeness of the setting, and the newness of it all burned through her coping mechanisms like wildfire. She literally hasn’t any defenses left. Any accomplishments she might make, are made nil by erratic behavior. She is suffering, trying desperately to keep from drowning, while the waves are just getting bigger.
At home, Riley isn’t much different. At times, she is silent, inconsistent, demanding, inconsolable, loud, and will take her stress out on the rest of us without warning. Those are a lot of harsh adjectives to describe my sweet, little girl. Make no mistake, I love my Riley more than the human heart is actually capable of handling.
And that was my downfall. I so wanted the “perfect”, “normal” life for her, that I became blind to who she was becoming in her own right. Before school began, we had a little girl, who despite being diagnosed as autistic, was capable of emotions and moods in the range of everyone else. Yes, at times she was a pistol. And there were some problems we were not capable of handling. But she was the best little girl she was ever capable of being, and more. And I overlooked it.
It’s easy to see where I went wrong, because I just wanted the best for Riley and didn’t want her to be burdened with the struggles I encountered at her age. But she isn’t me. She is her own, beautiful little person that has her own path to make. We will find the best way for her, with her as a guide to help us make sure we keep her first and us second. And her sister is coming along right behind with other special issues that will need to be met. So, this will help in the long run.
But I have the guilt of betraying my daughters faith and trust in me, I let her down. And I also have the guilt of letting my wife down by not listening to what she was telling me. As a parent, we all silently beat ourselves up over things we do to our kids that we wish didn’t.
So, here I am. I’m sorry, Riley, for not keeping you first and putting you in bad situation. And I’m sorry, Sarah, for not being the husband and father I should always strive to be. But, I promise to do better. I love you guys.
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*Must note – the picture above is a meld. On the left is Archie as a young boy, on the right, Riley.
by Sarah | Aug 31, 2010 | All About Learning, All About Molly, Autism, Crap, SID, Speech, Therapy
I was not going to write about this because it is a very hot-button issue in our house. But for that fact alone I have to post it. This blog is about us redefining perfect in our lives – and telling how we do it. No subject should be avoided, especially the ones that cut so deep to our heart that we fight about it within our house. Because this is one of those topics w/ opposing viewpoints (at least it started that way) – I’ve asked Archie to write a post as well. I’ll post it once he has written it.
Riley started school a little over three weeks ago.
She’s 5 years old.
She’s intelligent beyond belief. Possibly even brilliant.
Socially…emotionally…well, let’s just say she’s not near as ready.
I didn’t think she was ready. Not for a classroom full of crazy kids (not that they’re insane, they’re…well, for lack of a better term…they’re normal). Not to be expected to be that same normal.
I admit to a bit a bias. Our first attempt at school was not successful. It was developmental preschool, specifically for special needs. Riley lost learning. Her behavior at home became erratic and violent. She was withdrawn before Christmas.
Now she had to go to ‘normal’ every day kindergarten…with neurotypical kids.
I wanted her evaluated first.
School said no dice – she has to be in for 6 weeks so we can see how much is normal reaction/adjustment to being in school.
It went against what my gut said – but after much debate and discussion with Archie (who believed just as strongly that she had to go into school), Riley was enrolled. Literally the day before the first day of school she was enrolled & given a teacher whom we met that very night.
We ‘warned’ her teacher, explained how Molly was. How they wouldn’t evaluate her and just gave her a heads up on what she might expect.
The next day school began.
The roller coaster ride took off so fast I couldn’t catch my breath.
Excitement. Anger. Glee. Stress. Happiness. Stubborn refusal to attend. Joy off the bus. “I don’t want to go to school.” “I had much fun at school.” “I miss you Mom.” More stress. Increasingly erratic behavior at home.
Every day is a struggle to get her to school. She doesn’t want to go.
Then off the bus it’s happy and chatty.
Within an hour I’m fending off the hounds of hell. Trying to keep calm.
Suddenly Riley’s aversion to loud noises is back with a bang. At school the teacher has given her leave to put herself in time-out with her own personal basket of Sensory Diversionary toys when things get ‘too loud’ or ‘too crazy’ for her.
Then we get a letter from school, informing us that they are recommending Speech Therapy for her. That (surprise of surprises) she qualifies!
Well, DUH.
The more I thought about it, the more annoyed I got.
I could have told them that. If they’d evaluated her BEFORE school, all of that would be known. I don’t NEED her to be forced into ‘normal’ behavior for six weeks to tell you how she’ll react and what she needs. Don’t make me wait (at least) 6 weeks to get her what she needs. To make her teacher fumble around for (at least) 6 weeks to try to figure it out. Don’t make an innocent child suffer for 6 weeks for something I could tell you NOW. TODAY.
It’s all rotten.
And I still hate it. My gut still tells me to get her the hell out of Dodge until she’s ready.
Before my eyes she’s unraveling again. The balance we achieved has been thrown off. I don’t know if we’ll ever find it again…whether she stays in or gets out…the balance has been shifted forever.
We’re still in the middle of this process. Decisions are being made and changed, and we’re trying to find even ground again.
If there is such a thing anymore.
by Sarah | Jul 8, 2010 | All About Kennedy, All About Molly, Autism, Crap, Cystic Fibrosis, Hypotonia, Russell-Silver Syndrome
*Otherwise titled “The post in which I piss people off.”
From the time our troubles started, from the time we first realized there was just something ‘off’ about Riley. From the day We realized Angel’s torticollis was more than just a lazy neck and a heavy head. From the day we realized Angel’s cough was going for a month and showed no signs of letting up. From the first time Angel intentionally injured herself. From the first toys Riley lined up. Every day, every night, every in between we are aware. We notice when Angel runs out of steam before she’s played for ten minutes. We notice when Riley is starting to retreat into her shell. When we’re in danger of a meltdown of epic proportions. In danger of a night of a screaming, pouting, angry Riley.
We notice it all.
We see it in the every day.
We see it in the little things.
Every action, every reaction.
It’s a part of our lives. It is our every day.
Then you come along and say “But she looks just fine to me.” Or “She doesn’t seem autistic.” And of course the “She doesn’t act sick.”
I know you mean well. Really, I do.
But I hate it when you say that.
It’s like you’re belittling our every day.
The hours at doctors and specialists. The hours calming and refocusing an over-stimulated child (longest meltdown stands at 36 hours). The hours a day hooked up to machines to live every day. The way I lay awake at night listening to labored breathing. Check temperatures every time we feel a little warm.
I know you don’t mean it this way. I know you just mean to say that despite their troubles they look healthy and happy. That unlike other children with special needs it’s not a visible/noticeable difference.
But I hate it.
Just say they’re beautiful. Say they have a great smile. They look like they’re having a blast.
Don’t contradict what we KNOW. Riley does have autism (no matter how mild). Angel does have CF, and right now she is sick (and we spend every day wondering just how badly it’s holding on).
It is our every day.
We try to live life beyond our labels – and we only succeed by accepting them and integrating what they mean into our lives.
by Sarah | Jul 6, 2010 | All About Kennedy, All About Molly
Gimme head with hair
Long beautiful hair
Shining, gleaming,
Streaming, flaxen, waxen
[nggallery id=5]
The time has come, the girls are at the age for “pretty hair”! The whole reason I wanted girls…to be able to do their hair and play with it and style it.
They still don’t sit perfectly still.
There are occasional struggles.
But we all love “pretty hair”.
by Sarah | Apr 7, 2010 | All About Kennedy, All About Molly
In two weeks it’s time for my Irish Twins birthdays. They’ll be five and four.
Riley is trying very hard to read, and Angel is doing her best to follow right behind.
Riley can write her own name (forward and backward, literally), and is figuring out how to write the numbers 1-10.
Angel is curious…about EVERYTHING. We cannot keep her out of anywhere from touching anything. She is the child that as you run through the store runs her fingers along the shelves and tries to touch everything she sees.
Riley is cautiously curious outside of the home and her comfort zones – but around people she knows is talkative and friendly.
They are each others best friends and worst enemies.
Technically I should be signing Riley up for Kindergarten based on her age. That doesn’t seem real. It seems like just yesterday that I was in the hospital watching them decide the new pope on TV while wondering when the pitocin was going to make labor actually hurt (didn’t take more than a few hours). Or just this morning that I walked the four miles to and from Dairy Queen to try to spark labor for Angel, and lamenting the fact that it failed (it didn’t – just took two hours to hit me).
The days of diapers are finally gone (almost – we still wear pullups at night).
The days of learning and growing and wonder at the world around them have arrived. They are curious and thirsting for knowledge – and I can’t wait to keep watching them learn.
I miss my babies. More than I imagined…
But I’m loving the excitement of my big girls and their big personalities.
On occasion the random bullet-filled post is fun. Guess what you get today? The virtual grab-bag of crap…I mean, the bullet-list…so much less defined than a bucket-list 😀
