Yesterday, C.'s neurologist responded to our inquiries about raising the dosage of Valproic Acid based on C.'s latest drug blood levels. And I'm thrilled to report that she instructed us to go up. Since last night we've been at 600 mg. twice/day. In two weeks, we raise it to 700 mg. twice/day!
That exclamation point must betray my optimism. Of course I'm aware that with every unsuccessful medication attempt the chances of ever achieving seizure-control drop. And, I lost count ages ago of how many meds we've tried.
But there's still a slim chance. And, were we to get C. seizure free, who knows - she could progress functionally, too. So for now, I'll keep pressing that exclamation key!
The challenge will be getting six pills of Valproic Acid into C. every day. That's because it only comes in 200mg and 500mg tablets. An alternative would be one 500mg pill, plus 100mg of liquid solution. But then there's the worry about C. swallowing every drop and the nuisance of syringe-washing.
By the way, Hubby and I are still reeling from the "Sports Room" scene of yesterday. So far, we have said nothing, done nothing and shared the photos with nobody. Your suggestions for a response would be greatly appreciated.
4 comments:
Hi there!
I've been reading your blog for several months. Though I don't have any real suggestions for handling the neglect C. and other students are experiencing in school, I wanted to let you know that I found your blog when you posted a link to it in a NYTimes comment. So, keep commenting with your URL on related NYT articles and other sites to help dig up someone does know what to do!
All best,
Erin
Thank you so much for your comment, Erin. I hope you have found information here that's been relevant to your child.
To clarify our hesitation to report the neglect: Of course, there is always the risk of backlash from the staff when a parent complains about something. But with our children unable to report any such repercussions, that risk is far more worrisome.
Today, while we ponder further how to handle this, I instructed the teacher not to place C. in any of the "sports" equipment. In response to her "Really? But why?", I mumbled something along the lines of "Oh, we just prefer for her to remain in her wheelchair", then quickly changed the topic and made a great escape.
Oh, and I'm on the look-out for relevant articles at the NYTimes to post my URL - just as you recommended.
Just to clarify: I don't have children. I am, myself, a disabled young woman. Clearly my ability to read your blog and respond to you indicates the universe of possibilities between C. and me, but how a mother cares for her disabled child, how a family does, a school, a community, a government, and so on affects me directly although I exist on the other end of the spectrum. Everyday I rely on family, professionals, and friends to treat me with humanity. This attitude doesn't begin with people who care for moderately disabled people: it starts with people who are in your position and worse. You demonstrate that someone with extremely limited functionality is loved and cared for-- that C. is a human being deserving of love. This rises, socially.
I greatly respect that you send C. into the world dressed well and coifed. It sends the message that she is and should be cared for. Plus, you pick great outfits.
I also get the issue of backlash for reporting the neglect. These kids are so incredibly vulnerable. I hope you're able to devise a plan. You probably know the book Far From the Tree; it came out last year and focuses on families where a child is in someway distinctly different from what the family understands. There is a lot on families with children who are extremely disabled. I actually prefer your blog to the book, because your response to day-to-day challenges and to news has a sense of authenticity and immediacy that the book can't have. Far From the Tree has a MASSIVE bibliography, and I think parent organizations are frequently mentioned.
Wishing you the best,
Erin
Erin, I apologize for my incorrect presumptions about you. The fact that you have been reading my blog and find it relevant to you really moves me. I appreciate your positive feedback greatly. So many of us struggle to care for our children with profound disabilities as best we can with no encouragement or appreciation. On the contrary, we face criticism wherever we turn. Sometimes, we are told that we ought to be doing more while at other times we are told we try too hard and ought to admit defeat.
I read about "Far From the Tree" several months ago, made a mental note to buy a copy but then forgot to. Thank you for reminding me about it.
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