Thursday, November 29, 2018

Christmastime Is Here

Probably our longest lasting holiday tradition is going to cut down our Christmas tree as a family. We stumbled upon a tree farm when Maddux was a wee little one, and we've returned every year since. Because I know how our schedule(s) tend to get, especially during December, and because I know I'm cheap thrifty, and while I like to send Christmas cards, I have to get that Thanksgiving weekend 50% off deal, I decided to tempt fate and try to get our family photo at the tree farm. Hey, we were going to be there anyway, amongst the beautiful background. Why not just throw on some coordinating clothes and let me take a handful of photos? And then we could ask a stranger to snap a few photos of the five of us together.

Even though I was formulating this plan all week, I don't think i clued anyone in until the morning of, so we had a little bit of a scramble to find clean, photo-worthy clothes (meaning Eli and Lehr may or may not be wearing the same thing they wore last year). Ruby absolutely took her hair out on the drive to the tree farm (despite my labored efforts to braid it up for 15 full minutes at home). And when we arrived, Ruby's boots were not in the car. I honestly wasn't phased; Lehr could hold her for the photos and I knew most people wouldn't even notice.

The big kids did what they do every year: feign protest to me shooting photos.

I made each of them pair up at some point, jackets were sometimes on and sometimes not (it was FREEZING!).

I got a few of Lehr with each one, shoes or no shoes.

Then I passed off the camera to Maddux so she could take a few of me with Ruby and me with Lehr. As expected, she was amazing.

Finally, I picked the lucky family to take a few of us all. Some maneuvering of our people later, we had 4-5 shots of us all with eyes open and pleasant looks on our face. Thank you, random stranger.

And we also had these fun ones the rest of the time.

Monday, November 12, 2018

IEP

Those three letters carry so many feelings with them, and they are all over the map: dread, anxiety, hope, fear, defensiveness, (over)protection, anxiety, pride...did I mention anxiety? The lead-up for them has been so anxiety-inducing for me that I actually had an 'episode' during one a few years ago. It was an IEP (Individualized Education Plan/Program) called by us after Ruby was (wrongfully, IMO) denied qualification for the Special Needs Pre-K. We worked for six months to prove that she needed to be in there, so that meeting was one I was especially nervous about, as I thought we might have to continue the fight. We didn't - Ruby was given correct placement, but not before I felt like I was about to pass out and had to excuse myself from the meeting for 10 minutes to get fresh air slumped against the building outside of the school.

I know...sooo professional!

Today's IEP was scary for me because it was the first one since she entered the elementary school. With real report cards and typical classrooms and all kinds of areas where Ruby needs help. The year has not been going perfectly, and that definitely caused me some anxiety when it comes to what her team might suggest for placement going forward. She started the year in the inclusion class (typical kids, about 4 of them have IEPs), with only one segment of pull-out services (this is considered a big win for a child with Down syndrome in our county). One of my many fears was that they would suggest that she be pulled out more often, or (even scarier for me at this time), that she be in a different classroom altogether. For the last month I have been meeting with friends who have gone before me, acquaintances online who are in the know, peers who have insight, therapists who know Ruby - all in preparation for this meeting. I've been over and through everything from what we think her placement should be for her to be successful, to what is legally required, to what is actually realistic, and everything in between. I've said it before: it feels like I'm cramming for a semester exam, but I'm not sure of the specific class I'll be tested on. When I went into this meeting today, I wasn't sure what they planned to recommend for Ruby, which means I didn't know what kind of defense, or offense, I needed to pull out.

The good GREAT news is, it went well. Very well. There were three extra attendees in the meeting, all either county level or school administrators, and those three brought a lot to the table. So much so, in fact, that I had a looong list of things I wanted to discuss and point out, and one by one, members of the team (many times two of the three) brought them up before I had a chance, and presented them in our favor. It was as if they were my advocates and had already seen my notes.

So, the battle is not over. There is much hard work still ahead, for Ruby, for the team and teachers, and for us, but there will be some new supports in place that should help her achieve more success. But more importantly - no, MOST importantly - today gave us a glimpse of at least two 'new' people that see Ruby. Truly see her, and are in her corner. That is what I want. That is what we have with some of our therapists, that is what we had with her Pre-K teacher(s), that is what makes all of the difference, in my opinion. People in her corner give us hope. People in her corner see her potential and work harder to help her achieve it. People in her corner are God's way of giving me renewed strength in my advocacy for Ruby. So as far as I'm concerned, today was a rainbow!