Raising children with neurological disorders and realizing, after all these years, that I've only been "passing for normal"
Friday, June 24, 2011
1. I am just fuzzy. The slings and arrows of outrageous fortune have been coming so fast and furious around here that I don't quite know how to process them yet. So I'm just kinda dazed, moving forward in an automatic fashion.
2. My mother is here and helping tremendously by cleaning a house that hadn't been cleaned in too long (I've had to put off the cleaning lady for several weeks in a row, what with one thing and another) and had no energy to keep up with the mess. She's actually outside, now, mowing the lawn. God bless her. She's wonderful.
3. You know how last week we thought Miranda's rash was caused by scabies? Well, it wasn't getting better, so we investigated further and found bed bugs in her room. For all my West Coast readers, this is a pretty serious problem that will take weeks to resolve. For all my local readers, I won't take it personally if you never want to come to my house again. Seriously.
So, on Saturday we purchased and installed plastic covers for her mattress and pillow. And then, on Sunday, which as you will recall, was Father's Day, Marshall worked from 10 am to 7 pm to rip out the carpet and padding in Miranda's room, tear out all the baseboard and pull up all the carpet tacking. Then he dosed all the cracks at the edge of the room. We have seen a decrease in bug activity, but we still plan to spray all the furniture in the room with pesticide as soon as the mailman delivers it.
This would also explain why I have become the perpetual laundry machine because every morning, after Miranda gets out of bed, I look over her bedding carefully for any live bugs (and squash them) and then put all of her bedding through the washer and dryer, running both as hot as possible. I have been checking Alex's sheets carefully as well, but we don't have any sign of bugs outside of Miranda's room and we want to keep it that way. Of course, this means we have to keep letting them bite her every night until we've killed all of them. Not a happy situation for a parent.
She's had this "rash" on her body for weeks. Two trips to the pediatrician, school nurse, nobody identified it until we found a live bug. Apparently, her bites don't look like all the ones on Wikipedia and such. She's special, but we knew that.
4. But that's not the kicker. This morning, I took her into the city (read: Philadelphia) for a regular visit with our pediatric neurologist who had previously diagnosed her with a Sensory Integration Disorder but today decided a more accurate diagnosis would be to put her on the Autism Spectrum, like her brother.
We're essentially in shock. This shouldn't change her IEP or plan for the Pre-School Inclusion class next Fall but labels mean a lot, and we are just reeling from this change. It's not that we necessarily disagree; I guess we had just considered that Miranda wasn't as bad off as Alex since she didn't have ASD.
5. VBS starts on Monday and I'm actually starting to dread it. Alex was game for going to Citizen's Bank Ball Park last night for a special company picnic but he threw a tantrum all the way home in the car. VBS will take place at our church, where he loves to be, but it will be structured in a new way and for a much longer stretch of time. I'm planning to sit in a corner somewhere and wait for him to explode.
6. Some stitching progress:
At least I've made it to the bottom line of the pattern.
7. My mother's book, Bathsheba's Lament, continues to earn praises and recognition from among a growing number of readers. There is a great review of it on the International Christian Fiction Writers' blog that you must read! There is another awesome review of Bathsheba's Lament on LeAnne Hardy's blog. Read it here. Remember, if you haven't already ordered a copy, you will find it available here, or, if you are a local fan, you can purchase my last remaining copy of the book.
If you've read the book and enjoyed it, won't you please consider writing a review on Amazon for her? Click here.
Jen had her baby on Wednesday, so she's a little busy. Hallie is hosting today.
Posted by Sarah Boyle Webber at 3:58 PM
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Oh thank God your mom is there to help, that always seems to make things better. I am having my own set of VBS anxiety since I am helping with it this year!
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