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 She was withdrawn before Christmas.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.
I should have updated sooner, but as you’ve seen I had a lousy week last week. So here is the official Angel – CF update.
Angel’s lung functions went up – but only by 3%. This is not a good amount of improvement. We were allowed to go home, but our Pulm wants more improvement.
In case you missed it, last year I posted about our journey to the CF diagnosis (Here: Part 1, Part 2, Part 3). Because of that journey and the low sweat chloride levels, plus her generally clear lungs there has always been a niggling of a doubt about her diagnosis. Not just for us, but for the pulm as well. After x-rays she’d make statements like “her lungs look more CF now” and other statements like that. There was always a “maybe-probably” to it.
Well there is no more ‘maybe-probably’. Our pulm stated that any doubt is fully erased. You do not get Pseudomonas unless you have CF.
For now, we’re home. For now, we won’t be checked in.
We re-ran the sputum culture. If it comes back positive we start a new lifelong treatment cycle. The TOBI (antibiotic) will become a permanent fixture. Every other month she’ll be on the antibiotic. We’ll know by the end of the week.
So that’s where we are. Continuing on our path with our Angel a little the worse for wear. After this week it may be a regular regimen of medicine, but no hospital stay for now.
All taken w/ Canon Rebel XTi.
For week 7/12-7/18/10
This week was crazy bad (see previous post), but it also had some good things. Today is my birthday and I want it to be good, so I’m trying to remind myself to just breathe and remember the good things. These pictures help.
I did attempt to re-start project 365 this week, but I forgot on Thursday (worst day) and decided to try again next week, so hopefully that will be happening in the next few weeks. I want to get ahead of the game by a week.
I also got a new photo-editing/managing software program this week. I’m wishing I could afford the pro version when it’s time to buy, but I’m afraid it’ll not be happening this year. Either way, I’m loving my new editing software and will tell you more about soon. It’s my new best friend.
Onto the pictures!
Waiting on a train
Spanning the distance
Bridging the Gap
Lines Across the Times
Tying it all Together
Lost along the Way
Pretty Hair for a Special Day
JUST B-R-E-A-T-H-E (This was the test that determined if she stayed home or was checked in. She just had to breathe well. She didn’t, but she breathed better than last time. That’s my Angel’s RT in the picture with her. She always makes it fun for Angel!)
It’s a lot this week, I know…but Sunday was a good photography day. I ran out and took a little photo walk, thus the railroad theme for most of it.
Go over and visit Lotus for some more great WW’s!!!
Ever had one of those days? How about one of those weeks? Months? Years?
I’m in the middle of one of those weeks. Coming about 4 weeks after one of those months…which is turning this into one of those years.
Let’s focus on this week.
My birthday is coming up (this Sunday). For the past several years my bday has not been anything spectacular, and in some cases it’s flat out stunk. Not sure why, I just haven’t had the birthday Gods on my side or something. This year is proving to be no exception.
In one week we’ve had a trifecta of appliance crap, been overcharged by WalMart Eye Center, and lost the ability to finish my deck for my bday (all I wanted for it), oh and the plants I purchased for it are pretty much dead (my fault, I shouldn’t have bought them until it was done.).
First, over the weekend the fridge died. Freezer worked fine, fridge wouldn’t cool. Appliance repair guy came on Wed. Assured me w/ the statement, “It’s a $45 part.” Then proceeded to charge me an hours labor for a 30 minute job (that’s $60, mind you), AND $40 to defrost my fridge with what sounded suspiciously like a hair dryer.
Thursday morning I went to give my two little stinky angels a bath. Oldest was washing dishes. All of a sudden, there was no hot water. Well, crap.
I pull open the utility closet and the pilot’s out on the water heater. At least, I think that’s the problem. If it wasn’t, it sure became the problem when I turned the whole thing off. Archie came home and re-lit the thing and we have hot water again. We just aren’t sure how or why the pilot went out and hope it’s not going to crap out again all too soon.
Not four hours later I stepped outside and the Air Conditioner sounded really loud. Thinking it was odd I walked on over to find the fan not spinning.
GREAT.
On our side for that one is our neighbor is an AC guy and he came over to take a look.
But seriously?
Why does Murphy hate my birthday so much? Or, for that matter, me? I didn’t do anything to him.
Well, he can go to Hell. I’m taking my birthday OFF. I’m not going near an appliance, a vehicle, my computer, nothing that can break. I’m staying in bed and pretending it doesn’t exist. I’m really tired of this crap storm.
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P.S. For those who haven’t seen me on twitter or FB, here’s the Angel update –
SHE’S HOME!! No hospital stay for us! Just as suspected, we are now officially, 100% w/o a doubt a CF family. You do not get psuedomnas if you don’t have CF. The culture results will NOT send us into the hospital, but if they are positive we will be starting a lifetime regimen of one month on/one month off on the TOBI (inhaled antibiotic through nebulizer – very expensive stuff)…but we won’t know that for a week. I’ll keep you posted!
P.P.S. I’ve been trying to get back into 365 by getting a week in advance done. I’m afraid I missed yesterday w/ all the stuff going on…so it’ll be another week or two before I get those started again – but I will be participating in Weekly Winners again this week. Have a few pictures to put in once they’re edited. I have a trial version of a new photo manager/editor that I LOVE and plan to buy once we have the money. I’ll tell you about it later.
P.P.P.S. I actually have a bit to post about…but have been trying to skip days until I got more to write. I may just blow off that idea and do a random post of stuff. Who knows….
Angel goes in for her checkup after her rounds of antibiotics. It’s time to pay the piper. There are three possible scenarios after today.
1. Her lung functions have not gone up – hospital admittance, do not pass go, do not collect $200.
2. Her lung functions are up – go home. Get a call in a week that her sputum culture results are bad and we need to check into the hospital.
3. Her lung functions are up – go home. No further issues.
Now, obviously I want #3 to happen. I want her lung functions up and I don’t want a call in a week ordering us back in. I want her to be clear.
I fear the worst.
Stress for Archie and I is high today.
So I turn to a show I never watch, to find a pair of beautiful young women to inspire me and give me hope. Two sisters, Ali and Christina, both with CF (in a family of 4 children, all of whom have CF) – SINGING on America’s Got Talent. They give me joy, they give me hope, and they put me in tears every time.
*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.
Riley started school a little over three weeks ago.
