Sunday, January 26, 2014

Sometimes, he's really funny

When I was looking through pictures to find that shot I used in my last post, I used Picasa's "people" tab to look only at pictures of Connor.  What surprised me while I scrolled through the photos he is tagged in is how expressive his face looks.  In the larger scheme, it doesn't seem like Connor is very expressive, but in that small format, there is such a range of expression on his little face.  It made me really happy (and emotional) to see.

So about 20 minutes ago, he was chilling in his chair while I turned on my music on random and cleaned up the kitchen.  The first song was from a musical (of course).  The second song started, and with the water on I couldn't at first hear the intro.  Connor let out a really loud noise.  At first I thought I had made some noise that had set off a seizure, but the noise settled down, and I realized that it was just him expressing himself, the tone of his voice turning down as the volume decreased.  Almost like an, "Awwwwwwwww..."

I looked at the TV screen, and the song was "Jessie's Girl" and it was a recording of my with my old band, Gonzo's Nose.

I had to laugh.  I'm pretty sure he was trying to say to me, "Not this song again."  We must have performed that song 500 times when I was in the band, and who knows if it still gets played now at their shows.   I also sang that song a capella when in college with my group, the Virginia Belles.  It's a song that has been around me and in my life for a very, very long time.  It's been 12 years since I left the Nose, and it took me almost all of them to get to want to hear that song again. Now Connor is telling me he doesn't want to hear that song.

Anyway, it's nice to have something pleasant to post :)  Have a great rest of your weekend, friends!!!

Wednesday, January 22, 2014

It's not all about me!

Today, one of Connor's former teachers posted a link (which I'm including here at the end) about what it is like to be a special education teacher.  It made me think, and I wanted to share this, and write something about the wonderful educators who have opened up our lives.

When Connor was about 2, the social workers who worked his case with the County (since he received County services for therapies, he had a case worker) started preparing us for his entry into preschool.  Despite his whole life being this way, it hadn't occurred to me that he would have a preschool to attend.  We were expecting Drew at the same time, so we went back and forth between getting ready for baby and prepping Connor, and ourselves.  As I've mentioned before, Connor had great caregivers at daycare, and it was hard to take him out of there.  But we did, and Miss Christy was established with us, and then, the big day came.

(This is Connor in his Transportation Approved Chair.  That's his dad, of course, and then that half moon on the right hand side is my belly, courtesy of Drew. I totally cried when he was put on the bus, and I also totally blamed it on the baby in my belly.)

Anyway, his first teacher, Rachael, was with him for a year, and truly educated him and us.  She got us on track, helped us to understand the IEP process, and kept us informed all the time as to what was happening with him.  She was, and is, wonderful.  It surprised me at the end of the year that he wasn't staying there.  But Rachael, like the champion she is, helped us navigate through to the next school, and teacher, Robin.
Robin had Connor for 2 years, and while her communication style differed from Rachael's, we always knew what was going on, and we could tell how much the school loved having Connor's class there.  Then he had to move schools again.  Another new teacher, this time, Bianca.  Bianca had Connor for 3 years, and he worked so hard for her.  If she called me (which happened frequently) the call almost always, always started with "No emergency."  After Bianca came Liz, or H as she's called in the schools, and he's tried really hard with Liz, too, who has had to navigate around Connor's increased seizure behavior, a school change, a time change, and also her own life.  She's with him now, and should be with him for another year, and then we're off to the next school, and program, and teacher (I suspect).

Each of these women have taken on so much, and we have placed our trust in them unequivocally.  I marvel at their energy and love for these students, these children who cannot show their true feelings sometimes, or raise their hands in greetings. I am so, so blessed that there are people in this world whose goals are to ensure that those whose bodies have somewhat disenfranchised them still can find their voices, and express themselves, even in a small way.  They each have individually, and collectively as a group as well, an amazing and collaborative spirit that is missing from many parts of the world today.  We should hold up all teachers for what they do.  But here, at my house, we hold up Connor's teachers a little higher.  It's probably not a fair thing to do, but so far, it's what works.  I hope they know, every day, how much their hard work, their frustrations, their creativity, and their love means to families like mine.  It's a debt I won't ever be able to repay.

Blog posting about Special Education teachers:

Thursday, January 16, 2014

Sorry for the long silence

December was busy, and lots of celebrating and happiness occurred.  So did Connor's IEP meeting, which was not as awesome as we could have dared dream.  It's very hard to feel that you are a part of the team which determines his goals when the person dominating the meeting is a therapist who doesn't even work with him, but was there representing her colleague who actually DOES, and spent an inordinate amount of time talking about how he cannot meet his goals so they are going to reduce his therapy time.

Very frustrating, and emotionally devastating.  I am lucky, we are lucky, that we can be aware of this drainage, though, and process our anger separately from the meeting.  Connor needs the advocacy without the attitude (usually).  Then again, sometimes attitude can actually make things better!

It's time I made an admission.  There have been many, many days when I've thought of abandoning the regimen of medications Connor takes to see if it makes a difference.  In the mornings, he takes 4 different medications - Prevacid to control any acid reflux, and Keppra, Clonazepam, and Topamax to control his seizures.  In the evenings, he takes 3 - just the seizure meds.  But his dosages make the actually pill intake 12 pills (the Keppra is a large lozenge-shaped pill that we have to break in half for safety, the dosage of the other meds required multiple pills of each), and in the evening, 11 pills.

It's a lot of medicine to force this little boy to consume.  There are so many days when I don't want to, I don't think he wants it.  But I steel myself, and remind myself that it's necessary, and that his regularly tested blood seems chemically intact.

And then, in one night, I know why my gut won't let me take him off the meds.  We forgot one night.  Just forgot.  No reminders to each other, no double check (which is what we typically do).  In the morning, I was feeding him breakfast and he was showing these mini-tremors with extraordinary frequency, and it was very much out of character with his norm.  There could be only one reason.  We talked, and confirmed that we'd failed to medicate him the previous night, and he was 12+ hours off of his maintenance dosage.

Through that day, he recovered, got his chemistry back where it needed to be and calmed down.  And I knew immediately that no matter how badly I feel like throwing in the towel on the medications, I just can't watch him endure anything more aggressive than he had that day.  Now I have an alarm on my phone.  It's a simple thing, and I could have done it years ago.

The other boys have become really sensitive to the seizures.  If something bangs in the house, they will run over and say, "Fight it off, Connor!" like a cheerleader or "Oh, no, buddy..." in a sad voice, and console him.  And me.  It consoles me.  Recently, while they were running around being the strange little people they are (current favorite game - Egg Game, where they sit on their "eggs" until they hatch and stay covered in blankets) and Tucker ran past Connor, then came back, kissed his cheek, and went on.  To Tucker, it was just what he felt, so he ran with it.  I lean over and kiss Connor all the time, but I'm his mother, and he doesn't tell me not to.  He's at the age now that he would, were he able to talk, I think.  So I lavish him with affection to make sure he knows.

Last note, and one of great pride for me: in the coming weeks, Drew's class will be doing projects on Famous Americans, and one of the people from the group he can choose is Helen Keller.  He told me that he learned some about her at Library, and he wants to do his project on her because he thinks it is amazing that she could not see or hear, but still worked so hard and learned so much and was a leader.  I said, "You know, people who are blind or deaf like Helen Keller was are considered disabled."  He nodded, and said, "I want to learn more about her."

Gulp, and sniff, and thank God for children like you, kiddo.