by Sarah | Oct 6, 2010 | All About Learning, All About Molly, Autism
Over the past few (difficult) days, my mind has been lingering in the past. Not the long ago past, but just a few months ago. Before the sometimes-daily struggle for calm that exists now.
Back when there was a balance and a quiet routine to the day.
Not structured…by any means (something I need to start soon)…but routine.
Sibling rivalry existed, but not in the extreme sense we have now.
Fits were had, pouting and hiding in our room fits, but not so often.
Craziness occurred, but in fits and spurts not constant.
Nothing was ‘perfect’, but we were content in our days, in our everyday world. The group of kids in our neighborhood, while older, were known to the girls, and so Riley felt comfortable playing, laughing, cheering and screaming with them. She felt safe. We felt safe.
Now in the world of unknowns, constant change, and fighting to keep our heads above water I linger in the past. If only to get me through the current haze of extreme behaviors erupting. New and sometimes unnerving behaviors. We’ll deal with them all as they come…but sometimes it’s easier to disappear into the ‘then’ than it is to live in the ‘now’.
***
Update: In the efforts being made to move Riley to all-day Kindergarten the Special Services director said the word we’ve been needing (and dreading) to hear: Autism. In order to facilitate her move they are taking many steps, including consulting the ‘Autism Specialist’. We haven’t had our IEP meeting, but this confirms that they are heading in the direction we’d expected, and down the line steps will be made. It’s both good and bad…Good because having a psych say it will help us get the state assistance we need…bad because even though we’ve “known” for a long time…confirmation is always hard.
In the week since we’ve made the decision and tried to start prepping Riley for the change to all-day kindergarten we’ve been dealing with some extra chaos and thus this post. The switch, no matter how fast we rip off that bandaid, is not promising to be smooth.
by Sarah | Oct 1, 2010 | All About Learning, All About Molly, Autism, Cross Country
Earlier this week Archie got a call from the woman we’re working with in Special Services. She has recommended moving Riley to All-Day Kindergarten.
In essence she’s saying “There’s something going on, she does have issues – but we wont’ give you an IEP or diagnosis yet.”
The reasons were….
1) All-Day Kindergarten is for children that “need more attention.”
2) All-Day Kindergarten would give her more time in the day to evaluate her.
3) All-Day Kindergarten would give Riley more time to adjust to her day and settle in before it’s all over.
4) All-Day Kindergarten has a smaller class size – less chaos, more individualized attention.
All valid points. All reasons to go for it.
But then there’s…
1) All-Day Kindergarten lends toward more chances for Fire/Tornado drills (oh won’t that be fun).
2) All-Day Kindergarten means lunch. Riley can’t handle the chaos of snacktime in a classroom – you think she’s going to handle lunch in a crowded cafeteria?
3) She loses her comfort zones – her teacher and her best friend J.
4) All-Day Kindergarten means all day. Means behaving to the best of her ability all day. Means putting all that effort into being good at school – what unholy hell will we be unleashing upon ourselves by asking her to do this?
****
Well, we’re taking that risk.
I’d be lying if I said the thought of All-Day Kindergarten didn’t scare me on a number of levels…
But the thought of them having more time to evaluate her and getting this all out of the way is what’s holding me together. I still am not confident in the school’s ability to get this done – but at this point it’s our only hope. With the changes in insurance, getting her evaluated at the hospital is totally not in our pocketbook’s reach.
(And yes, it totally pisses me off that because of sh*tty insurance we have to rely on the school for Molly’s evaluation and diagnosis…and no, the geneticists diagnosis is NOT enough for us to get the insurance assistance we need. I’ve tried it before. We need one from a psych…thus we are dealing with the school…but that’s a totally different post that I won’t write for many reasons.)
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.
****
*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 | Apr 2, 2010 | All About Molly, Autism
Today is “Autism Awareness Day.”
For some reason as I heard the words in my head this morning I immediately became amused. I understand that it’s about spreading awareness of autism, but I could only laugh and think But I’m aware of it EVERY day.
This is our face of autism. Those gorgeous ice blue eyes. The smile that has found its way to her face somehow. The personality that is starting to grow.
Most would call us blessed, and we agree. Riley’s form of autism is mild enough that she will likely lead a “normal” life. A job, a family, all that a parent imagines for their child. That doesn’t mean she won’t struggle. That every day one quirk or another won’t rear its head to impede what would normally be an easy step into a careful shuffle of feet.
The little reminders that pop up.
The way she organizes her M&M’s by colors in a snakelike form before eating.
The way she delicately nibbles, trying not to let the grease or crumbs of food touch her lips or outside of her mouth.
The way we cannot break our established program or routine without a meltdown.
The way her hugs are strong but brief, no linger touches or snuggles.
The way you see her mind processing and learning everything she cannot express verbally.
Leaps and bounds of progress have shaped our winter, a sparkling personality is emerging from behind the walls. With those she trusts she is bubbling and bright, even bossy…but the meltdowns still linger.
We are blessed.
All parents are blessed.
I hope today your awareness expands, but shouldn’t it every day?
Over the past few (difficult) days, my mind has been lingering in the past. Not the long ago past, but just a few months ago. Before the sometimes-daily struggle for calm that exists now.
