by Sarah | Feb 22, 2017 | All About Kennedy, All About Me, All About Molly, All of Us, Autism, Blogging Life, I'm A Reader, Redefining Perfect, Special Needs, Wordy Wednesday
The first time I saw “The Baby-Sitters Club” in graphic novel form, I rolled my eyes.
“Why on EARTH would they make those into graphic novels when there are perfectly good books out there?”
It annoyed me.
It seemed a cheat.
I was a snob.
It took me looking at my child, my Molly, eagerly reading for the first time in ages after declaring she now hated reading. Her attention span wasn’t enough for chapter books to hold her interest, but graphic novels were another story.
It took me letting go of my bias to see how graphic novels could benefit a child like my girl.
I picked up those exact Baby-Sitter’s Club books for Molly at the library.
I picked up a bunch of graphic novels for myself to try.
I found I don’t care for the comic-book ones…but those that tell a story (or stories), I enjoy.
My favorites so far have been Through the Woods and Amulet. I have several more to try, and I’m excited to do so once this chaotic work week is over.
The best part of opening my mind has seeing my daughters both excited to read again.
Molly is so excited that she’s actually begun picking up chapter books again.
Kennedy is enjoying interspersing her chapter books with these quicker reads of graphic novels.
I’m enjoying expanding my painfully narrow repertoire of reads to include something different, and learning what I like in this new area.
So, in short…you can teach an old dog like me new tricks. It just takes me letting go of my bias and opening my eyes to see the benefits.
So now that I’ve opened my eyes, I need your help!!
What are the best graphic novels for my girls?
What are the best ones for me?
by Sarah | Jun 20, 2016 | All About Molly, All of Us, Autism, Connective Tissue Disorder, Redefining Perfect, Special Needs
We waited a month for this visit.
In the grand scheme of “waiting for a specialist” times that has ever been for us – a month isn’t bad.
Still. We waited a month. Worried over her shoulder, and what the doctor would say. Our geneticists suggestion of “Connective tissue disorder” ringing in our ears.
We worried.
Hoped for the best, expected the worst.
Wondered over whether there’d be an MRI. Or possible surgery.
Of all our fears we never once expected it to become what it was.
We never expected to be left wondering how a visit to a specialist would turn into a horrible vaudeville joke.
“It clicks when she does this.”
“Well, then don’t do that.”
~blink blink~
You would think I was exaggerating.
But I’m not.
None of our concerns were truly addressed.
We were dismissed with a prescription for therapy for “Scapular strengthening”. Told that she shouldn’t click her shoulder. And that was that.
No words about the connective tissue question.
He barely touched her shoulder, only tested her strength.
The geneticist spent more time on her shoulder than this doctor. He didn’t check to see if her arm dislocated like the referring doctor did.
An X-Ray.
A bad vaudeville joke (and he wasn’t even kidding).
And no answers.
Still.
I don’t even know where to go from here.
by Sarah | May 10, 2016 | All About Molly, All of Us, Autism, Connective Tissue Disorder, Redefining Perfect, Special Needs
I should have known better.
My first mistake was getting “comfortable”.
As comfortable as anyone can when you have three special needs kids.
Everyone was doing well, no major incidents for two years (*knocks on wood*). I was well-adjusted to our current status, our version of normal. Our version of perfect.
Were there hiccups? Well, sure. We have two girls on the verge of tween-dom and all the drama that comes with. Drama we’d been through with the now-teen.
But overall, we were good. We had things handled. IEPs in place, regularly scheduled doctors visits…in fact, we’d gone down in occurrences of those (from quarterly to every third, or half a year).
During our month of hell, part of the trauma was dealing with issues with Kennedy and Denver and their new doctor’s ways that we didn’t like and his poor poor choices. Situations we are still coping with, but wish so much up in the air, we are in a holding pattern (I hate holding patterns).
Then there is Molly.
Several months ago we were hanging around the house. I had my hands on Molly’s shoulders, and she moved. Immediately I noticed something odd. A very pronounced clicking when she moved her shoulder. I asked her if it hurt, it didn’t. I knew it wasn’t right, but with the chaos of all the crazy around this house it got pushed to the background.
Then today we had her regularly scheduled autism checkup with her geneticist/neurodevelopmental doc. We love this man (if not the hospital he’s affiliated with), and he’s been great with Molly from the start.
So I said, “I know this isn’t your area, but could you check out this weird thing?”
He checked her shoulder, had me do the same to look for a specific issue, then had her lie down and rotated it, checking everything. As she sat up, she decided to show him how she can bend her fingers in hyper-flexible ways. “Isn’t that cool?”
And so, the doctor explained to me that Molly has no connective tissue in her right shoulder. When it’s rotated, it becomes dislocated and pops back in. It is bone on bone.
Add in the hyper-flexibility in her joints…and he thinks we’re looking at a connective tissue disorder–one that we aren’t specifically testing for yet.
First step–we must go to an orthopedic doctor for her shoulder and determine the best course of action. She’s to stop goofing around with it (she finds it a neat trick), and take it easy on it, even though it doesn’t hurt.
As for the connective tissue disorder (he did not specify which as of yet)…it’s a wait and see. Deal with her shoulder first, watch for other symptoms (migraines, heart palpitations).
We are once again in the “hurry up and wait” world.
I hate being here.
With a white hot passion.
I was definitely stupid to get comfortable.
I know better.
by Sarah | Mar 17, 2016 | All About Family, All About Molly, All of Us, Autism, Disney, Make-A-Wish, Redefining Perfect, Special Needs
2014 – Disney, Universal, Make-A-Wish…My dear sweet Molly.
Oh, how she loved so much about the parks.
The princesses, the speedway (because she can drive!), the ice cream (because, DUH).
Just about everything was just AWESOME.
There was one thing that held her back.
One thing that kept her sitting on the sidelines about 50-75% of the time.
She was afraid.
Of the rides. Of the roller coasters. Of anything that left the ground in any fashion.
Lucky for her, her brother wasn’t too keen on the rides either. They sat out most of the rides.
Fast forward one year.
2015.
The year started out much like the year before.
Molly holding back.
Then something changed.
Something small.
She noticed the Barnstormer. She was afraid, but jealous of us going on all these rides and coming off super excited.
And so she took a chance.
She rode the ride.
And came off exhilarated.
She wouldn’t ride one that went upside down, but she went on every roller coaster from that point on. We went on the Barnstormer three times. She even, on the last night, went on Space Mountain. It terrified her, but she ended up loving it.
Little by little she went from Molly the Meek to Molly the Daredevil(ish). It was so much fun watching her emerge from that little ball of fear into eagerness.
She admitted after our last roller coaster (Space Mountain), that every ride scared her, but that was half the fun.
Molly stepping out of her comfort zone is a huge deal.
So thank you, Disney. Universal. For bringing out the daredevil in this one. It’s awesome. You’re awesome.
by Sarah | Jul 24, 2015 | All About Molly, All of Us, Autism, Blogging Life, Friday Feels, Redefining Perfect, Special Needs
Molly had a stellar year at school this year. Top notch, best on record.
Her grades were through the roof awesome, she jumped ahead in math and managed to get an angle on language arts and push forward.
Life was pretty good.
Then, came the end of that.
Fresh off the bus on the last day of school the first thing she said was, “I want to go back to school.”
See, Molly doesn’t handle change well at all.
She doesn’t handle the loss of a routine well.
So despite the leaps and bounds made during the school year, we have had a very difficult summer.
Molly is struggling.
Not sleeping on several occasions (like, at all).
Behavioral issues, despite taking her medicine nearly every day.
Anger, silence, uncontrollable laughing.
Enough to concern us.
And enough to make us look forward to the start of school in a few weeks.
I hate seeing her struggle and not knowing what to do for her.
I can only hope that the return to a routine and school, where she loves to be, will bring her back into focus.
Now if I could just get over the fact that she’s going into middle school….
by Sarah | Apr 2, 2015 | All About Molly, All of Us, Autism, Redefining Perfect, Special Needs
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 growing every day.
Most would call us blessed, and we agree. Molly’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 lingering 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 lives these past few years, a sparkling personality is emerging from behind the walls. A girl that wants to be a model. A girl that’s amazing at math and science.
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?
The first time I saw “The Baby-Sitters Club” in graphic novel form, I rolled my eyes.
