And Now For Something Different

Woah, I didn’t mean for this to become the all cancer, all chemo, all about me, all the time blog. Sorry. But wait, maybe not so sorry. I mean, this is MY blog and so, yes, I’m going to write what’s on my mind and these days, it really is pretty much all cancer, all chemo, all me, all the time.

Except when it isn’t.

I had parent/teacher conferences with Liv’s teachers yesterday.

They were basically what I expected.

She loves to read, she excels at spelling. She hates math. She needs a lot of supervision and yet…just the other day, she sat at her desk, her teacher sat six feet away at her own desk and Olivia worked on a project for twenty minutes without stopping to doodle. Olivia couldn’t not see if her teacher was anywhere nearby because her desk (O’s desk, that is) faces away from the teacher’s desk. They did that because Olivia and another classmate have bonded and if they can see each other, they giggle and act silly all day long. Now they’re back to back. Smart teachers!

(Tangent: The classmate that Liv has bonded with is in first grade. This makes sense to me because emotionally, I think that Liv is about 6 or 7 years old. So the first grader is her emotional peer. I take heart in this. It means she CAN connect with peers, they might just always be younger chronologically than she is. And that’s okay.)

She’s come a long way in the six or so weeks that she’s been in the smaller classroom. She’s working more independently (most of the time, we still get reports that she had a tough day and didn’t stay on task but they’re fewer and farther between.) Her handwriting has improved immensely. There is less doodling on her homework and classwork pages.

She’s still in the typical classroom for science and social studies. Her teachers wanted to pull her out for social studies but realized that if they did, she’d be getting pulled out often enough that it might raise some red flags with the state. So…no. We’re going to keep things as they are.

I mentioned that I’m actually okay with that because I truly believe that Olivia gets something, even if it’s very subtle, out of being around her typical, age-appropriate peers. It might not come through for years yet, but being with these kids, even for a couple of hours, during a couple of subjects, will help her in the long run. Sure, she might need extra help with the academics, but school is about more than the grades we get. Her teachers were both glad to hear that I felt that way because they agree.

I ended up spending twenty minutes with O’s newer teacher, the one who works with her most closely. Then I headed down to meet with the typical classroom teacher. She’s awesome and wanted me to understand that she wasn’t giving up on Olivia even though she’s only with her for two subjects.

I told her I understood that and never thought she didn’t want Liv in her classroom. I pointed out that Olivia is an enigma that we’re all still trying to figure out.

We talked about Liv for maybe ten minutes then she started asking me about my treatment.

It turns out she’d faced a cancer diagnosis not even a year ago and we compared notes about chemo and radiation and recovery. She didn’t have breast cancer, so her chemo was completely different. She never felt sick and didn’t lose her hair. But she was stage 3, which is SO SCARY and is currently doing very well.

And look at that, we came back full circle and are talking about me and cancer again. How about that?

Meeting O's Teachers

It must be a few weeks into a new school year.

Why is that? Because I got a call and a note that Olivia's teacher wanted to meet with me. I knew what was coming. I mean, she's in fourth grade, we've been through five years of school before this year. Each year, it takes at least two months for Olivia to make a connection with her new teacher. And yet, each year, about four weeks into school, her teacher contacts me and requests a meeting.

Of course I agree. It's what I do. I always want her teachers/aides/principal to know that we're all on the same team. We're all on Team Olivia. We all want the same thing. We want Olivia to succeed at school.

The problem is, each year she had a new teacher, a new classroom, new things to learn. And it takes her time to connect with each new teacher. Until she makes the connection, she just sort of sits there in class, a lump, making a mess of her papers, ignoring questions or just looking at the teacher like she doesn't speak the same language.

So her teachers always want to know from me how they can motivate her.

And I always respond with, "Good question. If you figure it out, share it with me and I'll incorporate it at home."

No. I don't actually say that. I say, "Please know that I understand your frustration. What you go through at school is mirrored at home. I go through the exact same thing each night that she brings home an hour plus worth of homework."

At that, yesterday, her teacher told me, "I feel so awful each afternoon when I see how much work she's bringing home because none of the other kids bring home that much homework. In fact, last night, no other kid in our class had any homework."

Olivia and I did homework the previous evening for an hour and fifteen minutes.

The work Olivia brings home is work she's supposed to do at school. She's given ample time to do the work at school but she just...doesn't. If she doesn't have an adult sitting next to her, she won't work. She will doodle all over the papers she's given. She pulls the lead from her pencils and then has to get up and sharpen the pencils (she's diabolical, if only she'd use her genius for good instead of evil.)

We talked. We told stories. Attending the meeting was her typical classroom teacher, Mrs. K., her special ed. teacher, Mrs. B., and the principal, Mrs. R.

After about twenty minutes the principal asked the director of special education to join us. She listened to the frustration Mrs. K. experiences with Olivia.

She asked if Liv is pulled out for any of her classes. Mrs. B. said that Liv is not, she stays in the typical classroom and gets and aide if an aide is available, which is not always.

The director suggested that we increase O's services, which obviously means amending her IEP to include pull out for at least a few subjects. They asked me if I was okay with that.

I reminded them that she'd been pulled out for a few subjects back in second grade and for a bit of third grade and did well with that. They said that her success with that was the reason they'd stopped pulling her out, they wanted to see if she could succeed as well while remaining in the classroom.

Yeah, obviously not.

So we're amending the IEP. She's going to go to a 'small classroom setting' class for Language, Math and writing. She's going to continue to go to lunch, specials (gym, music, library, art), recess, science and social studies with her typical classmates. This will help her maintain the socialization she needs.

I reminded everyone in the meeting that Olivia has come so far. Back in first grade, she wouldn't eat lunch with her classmates. She had to sit at a table by herself just to take a few bites of her lunch. We got her past that. She now sits with her classmates and eats her entire lunch everyday.

I also reminded them that none of them have ever worked with a student with 5p- syndrome. I wasn't trying to make excuses. I know that O can be a pill to work with. But most of the time, I truly don't think she's doing it on purpose. Yes, she's indulged and spoiled but we make her work at home too. She mostly feeds herself these days. She ties her own shoes. She wipes her own butt (that is a HUGE thing in my life, just saying.) But emotionally, she is not ten years old. She's more like six. She can't remember the things her teacher tells her at the end of the day. I need notes from the teacher so I can help her do her homework. She is still growing, still maturing, still learning. She will never stop learning, thank goodness. But she will always learn at her own pace.

I definitely think we should continue to challenge her but we should also be understanding that sometimes, she just isn't going to be able to do the things her typical peers can do. It's just a fact. It doesn't mean we're going easy on her. We're just adjusting things to her level while still expecting her to do the work.

And yes, I did get off my sick chair (I spend A LOT of time in the recliner as my bruises heal) to attend this meeting. Someday, if Liv ever reads this, I hope she can comprehend how very much I love her. This girl and her sister...they are everything to me.

Fourth Grade - or - Why This School is the Best for Olivia

Open-house at the girls’ school was on Tuesday.

Thought Alyssa had picked up her schedule, locker assignment and combination a week before, we had to go Tuesday to drop off Oliva’s twenty folders (okay, three), her markers, the socks she’ll need to use as dry-erase erasers and the many, many, MANY other school supplies she’ll need for fourth grade (a protractor? Really….?)

We also paid the school fees for the year. Freshman fees are only $24. Fourth grade fees are $50. Damn, fourth grade must be a big learning year.

When we got to O’s new class room (at the end of the junior high hallway…that is one smelly hallway…just saying) we found her desk and the little card that told us which locker was her. It also had the combination to that lock.

Yes.

Fourth grade is the year they start with combination locks at Liv’s school.

Lyss’s class was the last one to wait until fifth grade for combination locks. She stressed about that damned combination from May until the night before her first day of fifth grade. I bought her a combination lock at Walmart in June that year so she could practice. She was fine…obviously.

Olivia…did not stress over the combination lock. She truly could not possibly care less about that combination lock.

The day of open house, she started practicing with the lock we’d bought Lyss all those years ago. Tom went so far as to lock Liv’s tablet in a box and the only way she could get it out was to master the combination lock.

She found something else to do. I think she’d decided, “Screw you guys. I mastered tying my damned shoes, forget combination locks!”

So we got to the school and tried the lock. She’d spin the combination thingy so fast you could barely see the numbers. Stopping at 22 was nearly impossible for her. I’d tell her when she got to 30 to slow down and try to stop right at 22.

Nope, every single time, she’d stop at 20.

We kept at it until my knees started to ache from kneeling beside her.

Her special ed teacher came along and watched our ‘progress’. She told me that the aide would be there each morning to work with Liv until she mastered the lock herself. She also talked to Olivia’s regular classroom teacher and asked if it was okay for O to keep her backpack and lunch in the classroom for at least the first few weeks until she got the lock thing down.

Mrs. K, her classroom teacher was very accommodating.

I didn’t have access to email the day after open house. But when I opened my email this morning, I had this message from Liv’s special ed teacher:

Good morning,

Here is what the office decided for Olivia's locker. They took her lock off of the one she will be using.

However, I still want her to practice a combo lock for the fine motor practice. She will practice with locker 000 and the combination is XX-XX-XX. She will practice in the morning with Mrs. K.

Mrs. B

How kind is that? They’re giving her the chance to learn to use a combination lock while taking away the pressure of having to do it first thing in the morning just to put her backpack and lunchbox away. They’re letting her learn but letting it happen at her pace.

I love Mrs. B. She insists that’s more stubborn than Olivia and quite honestly, Olivia needs a teacher like her. She makes her work while understanding that sometimes, she needs a little more time, a little more help, a little more patience.

We couldn’t be in a better place for Olivia to continue her education.

And Now for Something More Positive

Remember that post from last week, the one about a note home from school? Yeah.

Yesterday was our annual IEP meeting to discuss Olivia’s progress and what accommodations she’ll need/receive next year.

First, let me state how grateful I am to her teachers, therapists and most importantly, the principal of her school. These people make me feel good about sending my child to them every single day.

Sure, I have moments of doubt like the one a couple of weeks ago when notes come home but we discussed that note in our meeting and her principal said that she actually likes that Olivia gets stubborn with them sometimes. She WANTS Olivia to find her voice, to start being a little bratty even because it means she’s coming out of her shell, she’s getting comfortable with everyone working with her and her place at the school.

At one point in our discussion about Olivia’s limitations and frustrations with her lack of attention, Mrs. M, the principal stopped us all. She had something important to tell us, she said.

“Let me start out by saying that I love Olivia. I started working here when Olivia was in KinderKids and at that point, none of us knew what Olivia could do because she was, and still is, such a mystery. She wasn’t talking to anyone here at school and we were beginning to think she would need to be placed in the special education class full time because we just didn’t know what she knew.

“Now, though, four years later, she’s proving she can do the work. She’s talking to every single adult that comes in contact with her. She talks to one peer at a time as long as no one else is focused on her.
“And most importantly, when she was in KinderKids it never occurred to any of us that she would take the standardized state testing. We planned to exempt her from the start. Then, when we decided last year to let her take the tests, we exempted her from having to pass those tests in order to move on to fourth grade. But guess what? She passed! She passed when other kids, typical kids, did not. She can do this work. We just have to break a few bad habits that have formed over the years for her and for us. She likes to be babied. She’ll let anyone, peers, teachers, therapists, parents, siblings, you name it, if they’ll baby her, Olivia will let them.”

At this point, she paused to let us all take it in.

Finally, she continued, “Olivia has proven she can do the academic work of her typical peers. Sure, we make some accommodations but in the end, she’s proven herself and we just have to continue to let her do that and expect it of her.”

It was all very reminiscent of the day we got Liv’s diagnosis. Her doctor told us to take her home, to love her, and to expect from her what we expect from her sister.

The meeting continued. Liv will continue to receive weekly speech therapy with a peer because she will already talk to the therapist but doesn’t seem to want to converse with peers, so we’ll work on that.

She’ll get more time, fewer options in multiple choice tests, the occasional pull-out for tests or extra help and she’ll stay in the mainstream classroom as much as possible because that’s where she’s getting the most out of school. Being with her typical peers is very important. She’s a mimicker. She’ll do pretty much whatever those around her are doing, even if quietly off on her own.

Which is why we don’t want her placed in a special education class with other special needs kids. She needs to be around typical peers to learn what typical behavior is expected of her.

I feel so much better today than I did last week when I wrote about that note.

I have so much hope for Olivia, so much faith in the team working with her and so much pride in how far my girl has come. She’s a warrior. She works so hard and yes, she can challenge the most patient person in the world but she’s a fighter and the fact that she challenges us just means she’s got a mind of her own and she’s figuring out how to express what is going on in that amazing mind of hers.