by Sarah | Jan 6, 2012 | All About Molly, Autism, Crap, Special Needs
[flickr id=”6650056311″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”left”]Every day without fail I pull into the parking lot of the elementary school to pick up Angel. At the same time every day I get into line behind the other parents, sometimes even in front of the line.
85% of the time so I don’t feel rushed to shove her in the car and go I end up toward the back of the line. This prime spot affords me a clear view of the area the older kids have their recess in. It’s mostly parking lot, but to the right there’s a large grassy area with a playground.
Every day in dry weather above freezing they run around like little ants. Hustling and bustling so fast it’s hard to keep track of them. All playing together. Laughing, shouting. Playing tag, pushing each other on the swings. Kicking balls, sliding down the slide. Talking. Laughing. Being with friends.
Except one.
One girl.
My girl.
My beautiful Riley.
Sure she runs. In circles. Behind the other kids.
Mirroring play.
Never participating in it.
Sometimes walking slow, all by herself. Other times watching, laughing after the joke has passed and the group has moved on. Never right in the moment.
And every time I see it, it breaks my heart.
She loves school.
I have seen in the contained space of the classroom how her friends aide her, pull her in to participate, make sure she is included.
It is only in recess that I see this.
If she feels the pain I do when I see it, she can’t express it. Or chooses not to.
But I know it’s there. I know that she will always remember the ‘different’ she felt. I know this, because her dad remembers the same feeling. The same sense of ‘different’. The same attempts to participate without the sense of how.
It’s something I don’t know how to fix for her. I can’t go to the school and force the kids to make the effort in recess. It’s their wild time, it’s expected to just run free.
But still…
What I wouldn’t give for her to be pulled in to the games. Instead of mirroring, melting in.
by Sarah | Nov 1, 2011 | All About Molly, Autism
[flickr id=”5314105434″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”left”]For a few brief shining weeks we had sunlight. Behaviors were eased, we were in the high-functioning range of life. There were smiles and lots of conversation and boy did we pig out.
The past few weeks we’ve been in a downward spiral.
There have been meltdowns. There have been smart mouths and pouting and stomping and periods of long angry silence.
We have been ignored in favor of ticks and quirks.
We have been witness to behavior uncontrollable enough that we’ve been asked by 2 doctors if we’ve been considering medication for her.
There has been a refusal to eat. Just about ANYthing.
We hold out hope that the worst will pass. That some modifications to schedule and school will result in an evening out. That medication will not be needed.
In the mean time we go forward. Facing each new challenging moment as it comes.
Wait for the light to return.
Hope that she can be happy. Without reservation.
by Sarah | Oct 26, 2011 | All About Learning, All About Molly, Autism, Crap, IEP, WTF?
[flickr id=”5885702438″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”left”]School started two months ago. After the gains made last year, and the IEP already in place, we started this year with more hope than last year.
At meet-the-teacher night Archie and I both started to get uneasy.
When we waited after the session to speak to the teacher. We asked about her behavior, to which she replied that it was still too early in the year to say anything. That she doesn’t really pay heaps of attention to behavior – in her class it’s about learning.
That was the first red flag.
Then I mentioned the IEP and her teacher last year, and the response was…
“Well, I don’t look at the past. What happened last year is last year. I give the children a clean slate.”
Alarm bells sounded, dinging loud in our ears. The IEP HAS to be looked at. It’s there for a reason!!!
Still, we sat back. We gave it a chance. We had our IEP meeting for the new year. We thought everything was established and set in it. Everything was put into place. In black and white. The plan was set.
And then it came time for Parent-Teacher conferences.
During the meeting first of the year test scores were discussed. How low Riley’s results were and what they meant. And then it happened. The teacher said:
“It may have had something to do with how she handles tests. But tests are a part of life, we can’t change that and we can’t change how they are given. She just has to learn how to adjust.”
Both Archie & I were stunned into almost total silence. We wrapped up the meeting and got in the car and both said, “What the hell was THAT?”
We have an IEP that states tests are to be given in accordance with her needs. Tests CAN and WILL be changed.
We have decided to switch teachers. There are more reasons than just those two statements, but those alone are enough.
A teacher that doesn’t refer to or care about IEP’s are not what is needed. At all.
by Sarah | Oct 6, 2011 | All About Kennedy, Cystic Fibrosis, Special Needs
[flickr id=”6217579492″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”left”]It was inevitable when we sent her out into the great big world of public interaction and the germ festival that is school. We knew that the possibility of increased occasions of illness were going to happen.
I guess we didn’t expect it to happen this fast.
Six weeks in and as of tomorrow we’ll be at 7 days absent. It’s about a 20% absence rate.
But this recent bout of illness this week has us baffled. There’s only a low-grade fever. No respiratory issues. A loss of appetite. Although who can blame her when the second she eats more than a small amount of food it all comes back up later?
And what comes up? Well, you don’t want a physical description. Let’s just say it’s cause for concern.
So tomorrow is the first sick visit of the year to the pulmonologist. We’re at an increased amount of “shaking” (percussion vest) per day because it seems there is an excess of mucous happening somewhere. Just not in her lungs. That we can tell.
Let’s hope it’s nothing serious. And that nothing serious comes as we get closer and closer to cold & flu season.
Were crossing our fingers for no hospital visit this year.
by Sarah | Sep 12, 2011 | All About Denver, Cystic Fibrosis
[flickr id=”5888954984″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”left”]It’s been a couple of weeks since the appointment I didn’t want to go to. Time to process. Time to settle into acceptance.
Oh yeah, and time to be swamped with school stuff.
Just last night I realized I never told you what was determined. What the “Final” conclusion is.
After the weird.
After the tests.
After more questions.
After nothing.
The pulmonologist said that once the test (that new ‘gold standard’ test) was sent to the official lab to be read by the person that is the know-all and be-all of it, he demanded more data. All of Brandon’s records were sent…and the conclusion THAT person came to was…
Brandon has CF. While his test ‘looked’ normal on the surface, a deeper examination plus looking at his medical records the conclusion is CF.
So our final official diagnosis for Brandon is “Atypical Cystic Fibrosis.”
We have our answer.
No more tests.
No more ‘but’.
Maybe one day it will change in the distant future. For now, though…for now we move forward with an answer. With the comfort of the likelihood being that he will not see some of the worst aspects of this disease. That there is a hope that he may never be seriously affected by it.
But there is an answer.
That is so much better than never ending questions.
Plus, the answer took so long in coming that by the time we finally settled into it, Brandon was not a wreck over it. He’d already adjusted to it being a likelihood. He’d done his research and made his peace.
And that is the best part of all.
by Sarah | Sep 8, 2011 | All About Molly, Autism, Special Needs
[flickr id=”5800817094″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”left”]Tomorrow we meet with the school.
One year later and I still can’t muster any enthusiasm for the special services department.
Yes. Riley did improve last year. She did learn a lot.
Still it seems as if it’s always a secondary thought. Like she’s lost in the sea of students. Like her needs are not as important as some other students.
We’ll see how the IEP goes.
If we find progress and hope.
All fingers are crossed.
But we’ll see.
