Christmas and Head Injuries

Simon & Matt, Xmas Day 2010

It’s been a while since I posted anything – we’re so busy that I’ve started about five different posts but haven’t finished any of them, and by the time I go back to them it seems to be old news. Over the last 2 weeks David and I have both been sick and out of commission to varying degrees, and we’ve had plenty of extra school and church activities for the holidays.

One of the bigger pieces of news for our little family is that in early January, David will begin going to daycare full-time, at the same daycare/preschool Simon attended for three years. There are a multitude of advantages to this arrangement: I will still be at home most of the time, still available to do sick/snow days and doctor appointments and manage all David’s services, but I’ll be freed up to get more stuff done.

There are many housekeeping/organization tasks (as well as sewing projects) that have been gone undone, and I’ll finally be able to tackle those. But my main project/hope is that I am going to finally write/organize/get published the book I have been thinking about and (to a small degree) working on about all our experiences with David. A lot of it is (kind of) already written, in Caring Bridge and blog entries, but there’s plenty of other stuff to work in, and it will likely take a lot of work to get it all into a framework that makes sense and flows logically. The main challenge I anticipate is while there will be some religion-and-Bible-related content, I do not want it to be categorized as a religious book; it’s mostly about parenting a child with special needs. As regular readers of this site are aware, I’ve read a number of parenting memoirs on this subject, and my guess is that I am just as likely to be successful as any of them. I have a couple of books (both half-read at this point), one is a general writing-tips book about being concise, merciless editing, etc.; the other is specifically about writing and publishing a memoir – making yours stand out from the million or so others, getting an agent, and so forth. One of that author’s tips is that at just about every point along the way, you should ask yourself, “So what?” What is so great/unique/heart-breaking/whatever about your situation that gets people to care, and pay money to read, about? One of the publishing house websites I visited awhile back said they are “deluged” with memoir submissions, so I guess that’s another hint to make yours/mine stand out. 

So, I am going to be a full-time writer! Everything I’ve ever read, ever, stresses that if you are serious about writing you have to be able to commit to doing a certain amount of it per day, and I simply don’t see that happening with our current arrangement. By the time the kids are in bed I am usually exhausted, and I think having a lot more time during the day will definitely help. I’m excited about this new opportunity, and I think David will really enjoy preschool. The staff already knows David and knows us, and he’s visited the school several times. This will be the first student they’ve had who has Down syndrome, so there’s also the opportunity for them to receive some general education about it.

Another side benefit will be that while the daycare closes at 5:00, Simon gets out of Kindergarten at 3:30, so he’ll have plenty of nice, quiet time before David gets home to relax, have a snack and start homework, all without little-brother distraction. And if I’m not already mostly spent from caring for David all day, I’ll have more energy and patience to work with him on homework (that’s the plan/hope, anyway J). Matt and I are currently brainstorming about other ways to assist Simon with staying on-task. He (Simon, though Matt thinks he is also a good candidate) was recently diagnosed with Attention Deficit Disorder, and Matt and I have had to move from “sort of thinking about” some things to do differently around the house, to “making concrete plans and actually implementing them” to support Simon. It’s really hard to help Simon when there’s only one of us home, because he really does need supervision and guidance in his homework, and David also needs constant supervision these days, with all his climbing. And oh yeah, I’m usually trying to start supper, too … I know these are all challenges plenty of parents face, but/and it’ll be helpful to be able to try this quiet time, to see if it makes a difference. We have a prescription for Concerta but are waiting to fill it until we meet with the school and find out what types of things they can try.

Side note: I have Attention Deficit Disorder too, but mine is a little different than most adults who have the diagnosis. In high school I was in a terrible car accident, with multiple fractures and internal injuries. I was in Intensive Care for two weeks, then the regular children’s hospital, then the rehab unit. There were multiple long-lasting effects, medically and psychologically, including permanent damage to my eyes from the closed head trauma I experienced. Last summer I had some neuro-psychological testing by a psychologist who does a lot of work with the VA, evaluating soldiers returning from Iraq and Afghanistan for TBI-related disability issues. She described what I have as an “Acquired ADD,” because the deficits I have in short-term memory and other areas are similar to others with the same injuries. I’ve been taking Adderall since that time, and it has really helped with focus/concentration and ability to plan and complete tasks. It has made my life so much better, so thanks, doc.

Further side note: Those of you who know me likely know me as something of an academic over-achiever/perfectionist/pain in the butt know-it-all, from childhood on. I finished college with a 3.9 GPA, and graduate school with a 4.0, all after the head injury. I mentioned this to the psychologist (it was slightly disconcerting to have this all brought up again; other than the slight damage to my eyes I never had any other problems, like with speech or movement, and it was weird to think of myself as “still having” a TBI), and her response was well, you probably had to work much harder than you would have otherwise had to. She said that according to my sky-high J IQ and other strengths I should’ve sailed through college and grad school pretty easily, but with the short-term memory and focus issues, I had to put forth a lot of work. And not that I’m complaining, but looking back on it, I did put in a heck of a lot of reading and studying time, but I guess I assumed that everyone else who did so well, did the same amount of work.

Further side note: Not that the psychologist ever mentioned the hyperactivity part, just attention problems, but if she had I think my husband would have had a stroke from laughing so hard. I might not laugh quite that much, but it is funny to think of me as being anywhere in the realm of hyperactivity.

Further side note: As a clinician, I of course went straight to my DSM-IV when the school initially raised concerns about Simon. I've gone over the diagnostic criteria for ADD about a hundred times or so in the course of my work; but this time as I read down the list I kept thinking, that's not right, that doesn't sound right, what is going on here? Then I finally realized I was not reading the criteria for ADHD, but for Asperger's, which of course is right before "Attention" alphabetically. This was a beautiful moment in life, when my attention issues and my son's came crashing together so perfectly. Whoo ... 

I hope that my having more time to do household organization tasks will help Simon, too. Right now everything is sort of shoved aside for Christmas decorations so I’m not too worried about that, but after the holidays our home will still be pretty chaotic. The other morning as Simon was struggling to get ready in the morning, I realized there were toys out everywhere – no wonder he keeps getting distracted, this living room is a wonderland of extraneous crap. And if David’s not home getting toys and books out all day … well, you get the picture. And if I clean it all up and Simon still can’t get ready, then at least we have a clean house.