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.


paul thompson said...

The strength of one's siblings can be amazing. For my birthday recently I pulled out a 8mm to DVD my brother made, and we watched and laughed at some of the antics he, my sister, and I did as kids that were caught on video. Disability aside, we got into SUCH trouble! if you are lucky, you'll experience the same.

Colleen said...

Thanks, Paul. I do wish he could tell his brothers that he sees them, and he knows them, and that they make him laugh. But I love that my two capable sons just assume all those things naturally!