by Sarah | Jun 4, 2014 | All About Denver, All About Erik, All About Kennedy, All About Me, All About Molly, All of Us, Anger Issues, Autism, BiPolar with Hypomania, Crap, Cystic Fibrosis, Random, Redefining Perfect, Special Needs
There are minutes.
Hours.
Days.
When it’s all too much.
When everything hits at once and I just want to collapse.
Cry.
Crawl in a hole.
Run.
One child with autism – now on ADHD meds.
Two with CF.
One of those that’s currently ill – and facing possible hospitalization for the second time in a year.
One of those that also has behavioral issues that make me wonder just how to handle it all with her.
A dad with Parkinson’s…which is rapidly growing worse.
A mom I want to help, but am clueless as to how.
A brother I haven’t spoken to in 2 years, with whom I’m now making baby steps to repair that relationship.
Finances.
A new job I never wanted, but needed to get.
A surgery to “Fix” a problem…that didn’t work at all, and might have made it worse.
The list goes on.
And on.
And I forget how to breathe.
I forget which way is up.
But I move on.
I continue on every day as I have every day.
Eventually I remember how to breathe.
My brain remembers how to process.
I find solid ground again.
Today I’m upside down.
Tonight sleep won’t be easy.
But maybe tomorrow…
Tomorrow will be better.
by Sarah | Mar 3, 2014 | All About Molly, Autism, Redefining Perfect, Russell-Silver Syndrome, Special Needs
One of our family’s favorite board games is SORRY! We play round after round on family game nights.
One thing no one ever likes is getting “Sorry’ed” right back to their start. One or all of us have been known to whine and groan over the inevitable gleeful “SORRY!”
No one likes being told to go back to start.
Now, that’s what we have to do.
Almost six years ago Molly received her “official” diagnosis of Autism (as well as Russell-Silver Syndrome). We foolishly felt relief at the diagnosis thinking now we could get help. We didn’t know what the road ahead of us held.
Now we’re drowning.
Since Molly is so high-functioning (possibly Asperger’s?), that our concerns are often set aside by others (i.e. the school) until a specific behavior presents itself. Every year we go in and try to be prepared for everything, but one of a few things happens.
- She starts off so off-kilter by the change of schedule/new event that any quirk seems mild by comparison
- Her behavior is so beautifully spot on and normal that any deviation is like a sudden attack on everything we thought we knew (or rather, they thought they knew)
- A new behavior develops that not even we suspected
This year we have reached a breaking point. The school has set her on a new behavior model because she degraded so tremendously after Christmas break. She isn’t listening to her teachers, she’s refusing to do anything, and she is avoiding tests like the plague (w/ standardized testing in a few weeks, this is not good, even w/ IEP accommodations).
The development of a possible learning disability on top, plus lack of focus, and weird tics and behaviors at home had Erik and I at our wits end.
We called the doc and got her in for her annual physical and set about finding out the next step.
Our pediatricians best advice?
SORRY! GO BACK TO START!!
So we must return to the geneticist that gave us our initial diagnoses. We’ll need to use him to unravel the confusion we’re currently in. There may be treatment for ADHD, we may see about getting her into a local ABA treatment, we aren’t sure what’s going to happen, but we have to go back to the beginning.
Again.
It’s a never ending process of hurry up and wait.
Mostly, Erik and I need to find local support. We find ourselves at such a loss so much, that we’re grasping at straws that aren’t there. We don’t know how to handle things, and that’s something that’s really hard for both of us to admit.
Now we wait until May to meet with Dr. E again, six years after our last appointment. Hopefully he’s able to help not just her, but us, figure out how to go forward now.
All we want is for her to be happy.
At peace.
Peace is so hard to come by.
*~*
Written for Things I can’t Say’s Pour Your Heart Out
by Sarah | Sep 5, 2013 | All About Learning, All About Molly, All of Us, Autism, IEP, Special Needs
Last year at this time I was frustrated, at turns livid, and tired of the fight.
Our call for the IEP meeting was later than it should have been. The struggle to acclimate Molly with her class and teacher was more tedious because we weren’t able to meet with her in a one-on-one setting until there was a problem.
This year I’ve already posted about our great head start by meeting with the teacher and her teacher actually reading last years IEP.
This week we had the IEP meeting.
The depth and scope of the IEP and their knowledge of Molly already, just a few short weeks into the school year impressed me. I don’t know if it’s because Indiana puts intense focus on testing and education once the kids are in 3rd grade, or because the 3-4th grade school** is just that much more on the ball…but not only did the IEP go smoothly, but they caught all of our concerns and needs before we even had to open our mouths.
Of course this deep attention means that for the first time we are facing the possibility of Molly going into the “resource room” for one particular subject, which we’ll know in the next six weeks.
But it also means that there will be accommodations for tests, independent work…for HER.
For the first time I don’t want to say “Our school system is amazing, unless you have a special needs student.” This year they didn’t drop the ball…they made a touchdown.
And I finally feel like I can relax.
*~*
**Our school system is different. There are only 4 schools: K-2, 3-4, 5-8 & High School.
by Sarah | Aug 27, 2013 | All About Learning, All About Molly, Autism, IEP, Special Needs
Last week I got an email from Molly’s teacher.
In previous years this was always cause for alarm. We got emails (or phone calls) when there were issues.
So, it’s to be expected that I opened this email with a small amount of trepidation.
Within the 20 words the teacher blew me away, impressed me, and made me so happy Molly has ended up in her class. It read:
“I saw on Molly’s IEP that daily check-ins were in order so I apologize for
not getting to it last week.”
First off – you READ Molly’s IEP? Before you were asked to? Before we worked on adjusting it for the new year (and upcoming standardized testing)? Voluntarily and without any prompting?
SCORE – no teacher has ever done this before.
Secondly – you are ACTUALLY doing as asked? You’re taking daily notes to email to me a couple of times a week at least, with hopes of moving up to every day?
SCORE – no teacher has ever done this before either.
With one email I was able to breathe out a huge sigh of relief. The struggles and confusion of the previous few years of starting school is dissipated and made easier all around for everyone.
When we go in for our IEP meeting next week I’m going to make sure that Mrs. B doesn’t think that she must email me every single day, but a few times a week will work just fine. Mostly because I know she’ll do it, because she already has.
Either way I think this year is going to be Molly’s best yet. We’re getting there slowly, but we’re getting there.
by Sarah | Aug 6, 2013 | All About Learning, All About Molly, Autism, IEP, Special Needs
Molly is entering 3rd grade.
It’s hard to believe that my little girl is in 3rd, and the baby is going into 2nd.
They start school in just over a week.
8 days.
Since mid-July I’ve been bracing for the upcoming struggle and battle.
Behaviors at home have gotten out of control again.
Anticipation always worsens the load for her.
I began in July.
I knew that it was on her IEP, but the school has convenient ways of forgetting these things during summer break.
I called the school office in July.
Voice mail told me the office was closed until August 1st.
But then July 31st we get the first official email from the principal. So I reply. I remind her of the IEP, and that Molly is to meet her teacher in advance.
And so, last week, Molly met her teacher. I met her teacher and was able to give a few ‘heads up’.
The school year hasn’t started, but I’ve prepped the field for battle.
I hate that I have to look at the start of every year this way, but I’m tired of her falling through the cracks and there being trouble because they don’t understand.
I’ve gone in guns blazing.
First battle is ours.
Now to finish picking up some sensory toys from Amazon. (Our favorites are the [amazon_link id=”B001EWC5M4″ target=”_blank” container=”” container_class=”” ]Tangle[/amazon_link] and the [amazon_link id=”B00A8PS4NC” target=”_blank” container=”” container_class=”” ]Stretch Balls[/amazon_link])
by Sarah | Jun 21, 2013 | All About Denver, All About Erik, All About Kennedy, All About Molly, All of Us, Autism, Cystic Fibrosis, Failure to Thrive (FTT), Special Needs
In the land of skinny genes, cystic fibrosis and oral aversions – we’ve got three kids rocking the low end of the growth chart. The words “Failure to Thrive” are bandied about on a regular basis and we are constantly checking little one’s diets to make sure they aren’t just getting calories, but healthy fats and plenty of vitamins and minerals too.
The universal consensus for adding all of these things to help my kids grow & gain weight like they should?
Doctors across the board have pushed us to full-fat Vitamin D milk. It’s all we’ve got in the fridge, and we go through 3-4 gallons a week between the kids and hubby.
Before this FTT world hit my life I knew so very little about milk because I wasn’t allowed to touch the stuff (still can’t) due to an allergy (allergy, not intolerance). These days I’m learning a lot about milk beyond my family’s obsession (seriously, the husband can’t stop drinking it)…because I like to know about what goes into my family’s bodies – especially if it’s meant to promote their health.
One thing that I love learning is how drinking milk is likely to help my own state and community. After all, Indiana is home to over 1200 dairy farms – 97% of which are family owned (and I’ve met some of those families). I was also surprised (and happy) to learn that most milk travels less than 100 miles from the farm to the grocery store.
Of course, the biggest thing I made sure to learn about and know really well is that both plain and flavored milk contain nine essential nutrients, including calcium, potassium, phosphorous, protein, riboflavin, niacin and vitamins A, D and B12. Considering my kids needs, this is of utmost importance. It means that they’re getting vitamins and nutrients that either they refuse to eat, or that their bodies are leeching from them.
And the only factor that matters to me, personally? Indiana – well, it ranks second in the nation for ice cream production. Because, I can only tolerate 1 serving of dairy a day…and you better believe it’s in the form of ice cream.
*~*
*Disclaimer: This post was sponsored by Indiana Dairy. This means I was paid for it, however all opinions are mine and true based on my own experience. You can’t pay me to lie about my family’s health…it’s too important to us all.
There are minutes.
