by Sarah | Dec 3, 2010 | All About Denver, All About Erik, All About Kennedy, All About Molly, Fatherhood Fridays
The holidays are always hard on me. I wasn’t the happiest or sunniest child, and that has carried over to adulthood. It always felt as if they snuck up and hit me in the back of the head, but then didn’t run away but stayed to continue doing it until February or March. There is some SAD to it, mixed with my own general depression/anxiety/obsessive-compulsive traits. Having kids has made it a lot better and I enjoy our Christmases together. As a parent, one of my biggest struggles has been to be upbeat and excited about the holidays throughout the year. Each year, I persevere, yet feel as if I leave too much for my wife to do. Sometimes it’s the way duties are separated in the household, each having mostly consistent roles and chores to be done. But nothing is ever written in stone.
Sadie is a SAHM, so most of the household duties fall to her; like dishes, laundry, cleaning, & cooking. I will occasionally do some of those, but never cooking(I’m a horrible cook). I usually take care of maintenance on the house & cars, do yard work, and of course, go to work daily to support all of us.
But when it comes to administering to the kids needs, physically and emotionally, both of us handle it together. Sadie is a bit more of a nurturer than I, but there are certain situations that I am better suited to address. And as for Sadie and myself, we have mostly balanced each other out well over the years. When I am struggling, she is able to keep from bottoming out. And when she is stressed past the limit, I am able to help her back to even ground.
What is hard about this year, and we try not to focus on the negative, is that our kids are having struggles with things we can’t help them with. We’re both still shell-shocked about Brandon’s preliminary diagnosis of CF, the reality is settling on us slowly, heavily. It was just so out of the blue, we thought to have him tested, but knew that nothing would come of it. I blame myself, but most parents do when something goes wrong for their kids. I know Sadie blames herself too, just a natural reaction. He is still getting high grades, wants to continue sports in the spring, and loves Boy Scout campouts. We think he is happy, or at least as happy as a twelve year old can express.
Angel having complications with her CF is not unexpected, but still is unsettling. How her function can go up and down so fast is scary, and makes us wonder if we’re not watching her close enough. Now she may have strep, although I don’t know the full ramifications of this yet. She gives us no symptoms or complaints until she is already well into sickness. However, she still has the brightest smiles and chatters about everything constantly. She can be read like an open book, but a book that you enjoy so much, you never want to put it down.
Riley is,…..well….we love Riley. As Sadie has posted, she has advanced and regressed at the same time. Riley is a whirlwind at home; usually blond hair flying behind her, fighting with and screaming at her sister, and talking so fast you can’t make anything out. In school, the reports are all saying that she is remaining on task better and learning LOTS of things. Infrequently at home, Riley withdraws into herself and just seems to vacate her body. This is usually when she is peaceful at home(not often). But she is slowly coming around to talking with us(REAL CONVERSATION MATERIAL). And she can be so loving sometimes, that her issues fade into the background.
I’m not saying that we have any more to deal with than any other parent. I’m just saying it’s tough, tough to be everything all the time. I have more respect now for my parents than I ever did before. Being a parent of children of special needs children is a hard job, but I have a feeling it won’t be the hardest thing I’ll ever do. That will be when they grow up and leave their mother and me.
I guess all I am really saying is love your kids. Love their strengths. Love their weaknesses. Love them as much as you can. Special needs or not, we are the lucky ones. Our children are alive and fighting, and we are in there fighting even harder along with them.
Enjoy your holidays!
by Sarah | Dec 2, 2010 | All About Learning, All About Molly, Autism
Back in November we had our long awaited IEP meeting.
They’ve confirmed and called it Autism Spectrum Disorder, Pervasive Developmental Disorder – Not Otherwise Specified. In other words, they aren’t specifically labeling yet. They need more time to decide if it’s PDD-NOS or Aspergers (both of which she has indicators for).
Therapies are in place to help her.
Her testing has been altered to accommodate her needs.
Goals are set.
***
According to her teacher, outside of the initial very rough period of adjustment after her switch to full-day kindergarten she’s made leaps and bounds in her progress. Her fits are fewer, she’s more willing to sit for projects.
She still doesn’t play with the other kids, and they don’t play with her. She shadow-plays their play…and occasionally attempts interactions – but she is ‘different’ enough in how she tries to play that the other kids don’t really respond to it. That worries me.
But she LOVES school. LOVES learning. Is so excited to go every day. Counts down the days until she can go back when it’s the weekend.
All along I’ve been convinced that school was wrong for her.
Some days I still believe that.
But I can’t deny her excitement to learn, to be at school.
But then I see the signs that everything isn’t hunky dory.
Beyond behavioral issues – the inability for her to settle down when she gets home. The increased fighting w/ her siblings.
There’s the sudden aversion to eating. She’s so skinny, she can’t afford to not eat. She’s turning vegetarian, refusing any and all meat – which would be fine if I had the slightest clue how to feed a vegetarian (we are a MEAT loving family here). Beyond that, her lack of eating is resulting in thinning hair again. I rarely try to give her ‘pretty hair’ any longer because her hair is so thin, I just can’t style it.
And the bed wetting. I don’t blame her or yell at her. She apologizes every time. She just doesn’t know. She crashes SO hard after big overstimulating days that she sleeps right through her need to go. It’s not her fault, but I have enough laundry without this kind of event happening nightly.
***
I’m still worried.
My heart is torn.
There is no right.
Keep her in, how many more behaviors will emerge?
Take her out, break her heart and cause another meltdown triggered by a major change.
There is no right.
I’m incapable of helping her.
Of handling my own conflicted thoughts and heart and mind.
Lost.
So afraid of making another wrong turn.
Afraid that we’ve already screwed her over.
Afraid that we won’t be able to correct this.
Afraid that she’ll never ‘fit in’ and always feel that pain the way her daddy does.
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 27, 2010 | All About Learning, All About Molly, Crap
But really, wouldn’t you make allowances for this face?
I met with Riley’s teacher last week. A pre-IEP/pre-parent-teacher-conference meeting. A “she’s beating the crap out of her sister, how is she behaving in school” type of meeting.
Her behavior scale is different than the other students – she has been granted more leeway.
But she hides under the desk. She doesn’t talk. The class has had their seats moved several times already this year – Riley has remained stationary. She plays alone. She shuts down if things don’t go perfectly. She has one friend.
One friend is better than none.
The other kids try, from what I’m told. Riley just isn’t sociable.
One of the biggest problems at the moment is that it’s mid-terms. The teacher is required to test every student the same. Riley does not respond to the testing the way it is. Without an IEP there isn’t a thing the teacher can do to accommodate her needs. We can’t get an IEP until the testing is done. Rock. Hardplace. Us. Suckville.
We are learning from our (vast) mistakes. But not fast enough to spare some pain.
The teacher is worried sick about what will happen during a fire/tornado drill.
I’m worried sick about how this all is affecting her. Affecting us. Our meeting with special services will not be until November. Our hands are tied until then.
I thought we were done with the “hurry up and wait”.
It will never end.
**********
*Apologizing for negative nature of post. Feeling negative/stressed. It’s carrying over.*
by Sarah | Sep 18, 2010 | All About Denver, All About Kennedy, All About Me, All About Molly, Cystic Fibrosis
Day 06 – Something You Hope You Never Have To Do
My biggest fear day in and day out.
I hope I never, ever, have to bury one of my children.
I hope that Brandon, destined to drive in just a few years, finds and uses common sense. That he has the same instincts I did to never use drugs, to not drink until he’s older. That nothing happens to mar is bright future.
I hope that Riley far outlives and outshines me and her father. That none of her issues cause her problems. That she grows to be a proud and strong young woman.
Above all I hope for a cure.
That Angel never has to wait for a lung transplant to save her life. That she doesn’t have to live her days hooked to machines that force breath into her failing lungs. That they find a cure for even her unique a-typical form of this horrible disease.
I never want to bury ANY of my children.
Yet daily I wonder if I will have to.
I hope to the heavens that I won’t ever face that.
