Monday, September 28, 2009


What a fantastic article. Note that it is one of a series to be published.

I found myself nodding along with the author's assessments and descriptions -- mostly spot on and quite articulate. No doubt he's already provoking a great deal of manufactured controversy, delivered by folks who read defensively and thus missed his explanation of a life that works for their family. Funny how we filter, yes?

Tuesday, September 22, 2009

Q news

It's been awhile since I've laid out what's up with Q, so let's dig in, shall we?

While I was teaching art, Q's SLP tried a little something different with him for their session. She mixed together a 4 oz container of stage 2 pears and about half a box of his Boost supplement. The consistency was a little more solid than a melted milkshake. He drank it right down, no fuss, a minimum of muss. So I'm pretty much mixing everything to that consistency these days. I think he's caught on though, and seems to now suspect that the rest of us are having food better than his. Wah. As much as I would love to have one thing for him that could be just solved, once and for all, he is a growing boy and I would get bored with that. Eventually, I am sure. Still no swallow study scheduled.

Our beloved OT is back just part time and so we're still with The New Guy. He wouldn't mind being called that, because he has a deadpan sense of humor. Q was mildly taken aback at that, but has since caught on and obliged delightfully, speeding up his response times and pushing himself a little -- obviously choosing which activity and then pushing buttons repeatedly so he could get what he wanted. The New Guy has an interest in AAC and catches passing opportunities to learn more about how to apply adaptive thought to kids' needs.

Our beloved PT (once A New Guy) is seeing Q twice weekly now. We're looking at rearranging the schedule a bit, so mommy can keep those last shreds of sanity (snort), but we'll keep two hours per week of PT. Our PT is in charge of equipment for Q (coordinating needs with the other therapists). When I brought up the stander issue last week (it's extended out as far as it will go, height-wise), we ended up discussing each of the other items Q's using or will be likely to need soon. I learned then that we're hoping the walker will take the place of the stander, at least eventually. A few weeks ago I finally got the leg splints Q has needed, and he's using them successfully, pretty much daily, to keep his knees at 180 degrees (straight) while he's in the walker. He needs to have constant attendance with this, because he slumps when he gets interested in other things and isn't relying on high (increasing) tone for upright support. Other equipment: next week we'll pick up a loaner potty chair, or rather, we will if Q fits it. This is stunning, no? He's dry most mornings, so we're going to give it a shot. So to speak. Later this fall Q will need a new set of AFOs and is new ones will have toe straps, to help him with pronating big toes. Something that we may eventually be looking at is at home e-stim (electronic stimulation). A small, alternating electric current is applied via sticky electrodes to particular muscle groups to help a kid recognize those muscles. These kinds of units have been touted in infomercials as the latest in exercise, providing a passive method for increasing muscle mass. It doesn't work that way. (I know you're shocked at this.) It's more like a tickle, a strong tickle, that calls attention to itself, helping the client/patient to have increased awareness of that particular area. Q has used this in PT a couple of times so far and was quite a bit more upright as he was standing, playing with his favorite ball. It's exciting to see, and seems promising, but I'm not anxious to add another piece of equipment to our lives unless it's clearly needed. Space and time are both pretty scarce just now.

Q goes back in October to discuss Life Without Trileptal and perhaps even the timing of an oral Baclofen trial. I attended a CME on Intrathecal Baclofen about seven weeks ago. It was fascinating. Really. Sometime we could discuss GABA receptors and Baclofen delivery methods, liver toxicity, lumbar test dosing and proper placement of the eventual pump. Really, really cool information.

But for right now, the boy went down and all appropriate machines (dishwasher, washer, dryer) are running, we have earlier than usual therapies in the morning (hoping this time slot could become a regular thing) and so I am (shhhh...) going to bed. He didn't go down until 1:30 this morning and was then up a few times in the night, so sleep is seeming like the loveliest thing in the world.

Rest well, more later. XO

Friday, September 18, 2009


I had a meeting with the school district this week.

Their email:
It sounds like we can offer services in the classroom at this time. If you are not able to have Q attend due to scheduling issues you have the right to not participate in special services. If you would like to do so I can send out a Written Notice and letter to explain this formally. Let me know what you decide. Thanks,

My response:
Thanks, _____. I want to be clear, though, that scheduling is a tangential issue for me. While it presents certain difficulties, none of those difficulties is insurmountable. The original issues remain: First, which services will best meet Q's needs? His neurologist has indicated (and his pediatrician and I agree) that an ongoing combination of CTU and school services would be most beneficial to Q. Second, how do I keep Q as healthy as possible while maximizing his use of those services? This goes immediately to his ability to participate in learning -- as we've discussed, when he's ill his already reduced capacity to participate in daily life becomes non-existent, right down to feeding, never mind learning or therapies.

I am fairly unconcerned about Q's basic intellectual development -- his home environment is rich and varied, presenting age appropriate and older learning opportunities. However, I cannot provide for him the access to specialized equipment and personnel which is available through the ______ school district-- all of which have, again, been clearly indicated as part of Q's best case scenario by the doctors in charge of his care. I believe his IEP would reflect the same, per the school district therapists' evaluations.

Gotta go feed the boy again. Thanks again, _____.


This does not remotely represent the whole long conversation, but it might, maybe, convey my frustration with the process. He's had an IEP since January. No services, but meetings here and there, and plenty of patting of my head for suggesting that he is even approaching medically fragile. He is borderline immuno-suppressed. Well. I'm assuming he is, since we don't pass a winter without steroids in the nebulizer, his first respiratory diagnosis came before he was two months old, and his functional respiratory diagnosis is Reactive Airway Disease.

I resent, yes, I resent that these meetings have morphed from an atmosphere of camaraderie to one of suspicion. Or something. They began with us all being pretty open about the things available to Q, the therapists being magnificent (they still are), and have ended up with me bawling my way through the last one, seven persons who work for the district vs. me. The PreK teacher seems fantastic. The therapists seem fantastic, one of them who met Q a year ago going so far as to gently amend the summary of Q with a few details of his personality, which she clearly finds to be delightful. The rest? I don't know. I imagine that it's much the same as in other professions, like medicine: doctors talk down to their patients because so many patients refuse to participate in their own care or literally can't develop a vocabulary that will help them to do so. It's frustrating then for a patient who understands more than your average bear to be treated like an imbecile. It's frustrating for the doctor to know things that could change that patient's life forever, only to be ignored.

I'm about to fall over on my head, so I'm going to sign off and sleep, I hope. Q is snuggled up with grandpa, so now's my chance. I've got some writing to do elsewhere and then, next up: the summary of Q's current activities (I hope).

Hope you find yourself overwhelmed by kindness, sleep-wealthy, and thrilled to be where you are. Pax.

Monday, September 07, 2009


I would totally do this.

Friday, September 04, 2009


School's been a bit of a struggle this week. We've had some book work, some art, lots of piano and violin, a kid who set her own alarm for 7:30 and is getting up to take things on in the morning (go back and read that again -- it took me awhile to understand those words myself), some need to confiscate various screened devices (boredom = lots of reading). We've devoured a big box of peaches, tomatoes on the vine, attended to therapies, groceries, more therapies, more reading, earlier bedtimes (recalling the 7:30 alarm -- hooray!), and a gazillion loads of laundry.

Getting the kids into the swing of things is always harder when certain other aspects of life are up in the air. First there's the adjustment involved in coming back from their dad's, then the fact that I'm trying to rearrange chunks of the house. It's a bit confusing, really. Something has simply got to give as far as Q's equipment goes. He must be able to use it, we must all have living space, some of us do enjoy sleep and find the level of chaos surrounding the management of stuff to be time consuming and draining in the extreme.

I fantasize about getting the kids down to a couple of pieces of memorabilia each, their own pillows and sleeping bags, laptops, less than a dozen books, cameras, backpacks, some art supplies, and throwing us all into one of those enormous RVs -- four bunks, each with some shelving and privacy curtains, a couple of drawers and a closet to share. It would have to have a master "suite" which would include a queen bed for Q and me -- other sleeping arrangements would be nearly impossible for him in such a configuration. A crib would take too much space from the rest of the group, and I couldn't put him on the floor because he's getting harder and harder to lift. I think we could easily get his walker and chair into such a space, though. Maybe the feeding chair? Or the Bingo could fold up and slide underneath in those spiffy compartments.

I've always wanted to do this, even before Q. Back when their daddy was working such long hours that it was a serious fantasy of mine just to get him into a place where he couldn't answer a pager, phone, or email, where he could just be with the fam and we with him. I was reasonably sure that even in an RV the bedroom door would have a lock on it, and I wanted us to go see Williamsburg, spend some weeks, maybe months, touring the country, making memories with the kids of caves, canyons, buildings, trains, art, deserts, beaches, us.

Anyhoo, it's still something I'd love to do, with involved and careful planning so we could manage Q's stuff. It has occurred to me that time for something like that may be slipping away as Q gets bigger, his spasticity more pronounced, and he's generally just harder to maneuver. I haven't looked into modifying an RV, but it's expensive to deal with just ordinary autos' mods. I've considered the fact that payments on a ginormous vehicle are less than rent, and that it would be a character building exercise for us to just live in that kind of space.

Aw, c'mon! Think positive! Stop rolling your eyes. Anyway, the kids won't miss it if we never do it, so I will tell myself. They've gotten their RV experience in already, so they're much more pragmatic where I have delusional romantic notions.

How did I get off on that? Oh right, stuff. STUFF. Maybe six years ago now I heard about a guy who decided that since his travels kept him both collecting things and spending very little time actually in his home, with his stuff, he was going to turn all his stuff into digital format. So he took pictures, made notes, wrote a little about the memories he had surrounding those objects, and ended up with a drawer full of compact flash cards in a bank. Wow, I thought. Way to go. Kids and babies do not subscribe to this philosophy of traveling light, be it through life or on actual trips. But with help they can be converted. I'm pretty sure. We're working on it.

There are things I would have once had a serious problem letting go of. They just seemed to represent so much of our family, then -- memories, really. It's amazing how life sometimes conspires to change our attachments. When we were planning a cross-country move it hit me so clearly that the stuff wasn't us. We were more than the things we owned, such as they were. When much of that stuff that I still thought of as precious later disappeared, some in a misunderstanding, some through means I can't really explain, it was an uneasy time. But I'm still here. I still have the memories. Certain things I think I'll always keep (anniversary presents, letters, pictures), but suddenly, well it seems sudden but it was probably years in the making, I want to load up my little brown messenger bag (that I got in college to replace the one that was full of that quarter's books and my whole cashed paycheck and was stolen out of my car when I popped into someone's apartment to say hello one evening...). I want to load that durable little fake leather bag up with a few minor electronic things of mine, put the aforementioned personal items into individual (small) spaces for the kids, and just go. There would be a few other considerations -- I need a decent pillow, Q prefers sleeping on memory foam. We should pack clothes enough to last between laundromats. But Q's not needing doctor visits every five minutes just now (though winter's coming), we have no seizure meds to concern ourselves with and the Baclofen talk doesn't happen until October (new med to try which means we're right here, not going anywhere or doing anything while we figure that out), his equipment is smaller now than it will be in the years to come.

Hey -- I could get the kids' passports all in order and we could see P.E.I. while we're back on that other coast. How cool would that be?

I could continue, but adding detail to the fantasy doesn't really accomplish anything. Q's finally out, and I'm wiped. There's lesson planning to be done, writing, ordering, tossing, filing, and garbage yet to attend to. Aren't brain vacations nice anyway? Maybe we'll have to think up some variations then. Or just go ahead and budget for a 1.5 terabyte external drive. That would hold us for a bit, while I try coming up with some new travel fantasy. Maybe this one should involve nursing care for Q and scheduled naps for me -- probably the single scariest thing to me about taking off cross-country with the kids is how durned tired I am already.

XO, peeps. Hope you're resting well.