by Tim on November 29, 2009
These past weeks have been a serious reality check for us. All of us have been sick, hurt, or both at one point or another. Not surprisingly, this has weakened both our physical and emotional defenses. That’s a nice way of saying that we’ve turned into a bunch of grumpy, rundown, sick people who aren’t coping well.
I tend to process things best by writing about them. This has been one of those periods where every time I sit down to write, my brain just locks up like an overloaded computer. If nothing else, I guess it’s made me appreciate perhaps a little of what days are like for those of our kids whose brains are overwhelmed most of the day every day.
It recently became evident that we were losing control of most facets of our life. The J-Man was obviously experiencing some significant changes to his sensory system, and seemingly none of them for the good. He seems to shoot wildly between wide-open, screechy, running around, stimming overload to almost totally shut down. It’s hard for him to find a happy medium. That on top of all of our physical and emotional wear-and-tear and stress so thick you could cut it with a knife, we’ve been fast reaching an unsustainable place in life. And then last week it became really clear that it was worse than we thought. (More on that in a second.)
[click to continue…]
by Mary on August 19, 2009
[In case you're wondering about the whole 'Dale Jr.' thing, for you non-Southerners, the son of Dale Earnhardt - a stock car racer of Biblical proportions - is often referred to as Dale Jr., but originally his nickname was Little E. So it looks like our Little E is now Dale Jr.! If that made no sense, just go with it.]
It may have been the best of times. It may have been the worst of times. I really can’t tell you. I remember very little of the J-man’s first year. It was really a blur. I was SO TIRED all the time then that now, when Dale Jr does something, I ask Tim if the J-man did that too… because I truly can’t remember. So, for your reading pleasure, a comparison of the two so far:
Sleep:
J-man: what’s that? Why would you think I needed to sleep? I have to be up to eat every 2 hours anyway, so why would you force me to try to nap (for 25 minutes initially, although we did get that number up to FORTY WHOLE MINUTES)? I sometimes will only sleep while in a carseat with the car moving, so Daddy perfected “driving naps on 540.” Also, putting me down “drowsy but awake?” HA HA HA HA HA. Seriously, just nurse me to sleep, then hold me for at least another 30-40 minutes to make sure I’m really asleep, then carefully, carefully, carefully put me down, leaning your whole upper body into the crib so we are touching until the very end. Plan to be back soon! If I make a noise, or shift slightly, go ahead and get up, because I will be. I was still waking every 2 hours at 7 months, and didn’t sleep through the night until I was 18 months old.
Dale Jr: obviously read those “sleep books.” I love this. I love my crib. Is my thumb there? Then we’re good. I started sleeping 10-12 hours straight per night at 2 months old. I am the poster child for “put me down drowsy but awake” which Mama figured out only because she really had to go to the bathroom, so put me down in my crib for just long enough to do that… and I was out when she came back. I enjoy napping, and have been able to self-soothe from the beginning pretty much. Mama and Daddy spent several nights waking up to make sure I was still alive because they couldn’t believe a baby could sleep that long.
Eating:
J-man: I will nurse and nurse and nurse and nurse and nurse. And hate the bottle. And nurse and nurse and nurse and nurse and never let go even while sleeping. PS: and nurse.
Dale Jr: I nurse when I’m hungry, and then I’m done. I don’t especially like to go to sleep nursing. I have taken a bottle a few times, and seem to be OK with it. I DO nurse about every hour during the day (when I’m not sleeping) but since I don’t nurse at all during the night, Mama is perfectly happy with that.
Size:
J-man: I am HUGE and outgrew some clothes before I ever got to wear them.
Dale Jr: I am HUGER and outgrew a LOT of clothes before I ever got to wear them. Also, I’m out of sync with brother’s clothes sizes, so the hand-me-downs aren’t helping at all. Also, I’m growing out of the 9 month summer clothes that Mama bought when I was 2 months old because I outgrew the 6 month clothes she bought when I was 1 month old.
How Mama’s work is going:
J-man: I occasionally made Daddy drive me to Mama’s office because I would go on bottle strikes and refuse to eat. I ate enough during the day to not starve to death, and then nursed until I could not nurse more at night which made Mama tired. People in Mama’s office got very angry when she went to pump every 3 hours. Mama is surprised she didn’t wreck driving to work everyday in a daze state from lack of sleep.
Dale Jr: Mama’s work people have heard me on conference calls because sometimes I need to eat, and are perfectly fine with that. They also realize Mama gets way more work done now that she’s home.
How Daddy’s work is going:
J-man: Daddy doesn’t get to work during the day. Ever.
Dale Jr: Daddy can work while I nap. Sometimes.
Maybe now is the best of times. It’s not the worst of times. It is a good time.
I saw the results of a study this morning that gave the total cost of raising a child (in our lingo, a neurotypical child) into adulthood. Let’s compare that to the cost given by a Harvard study a couple of years ago on the cost to raise an autistic child into adulthood.
Average cost of raising a neurotypical child – $290,000
Average cost of raising an autistic child – $3,200,000
But wait! The mathematically astute among you will notice that the second amount doesn’t quite add up logically. Not many people even make that much in income over 18 years. A chunk of that is because health care and educational expenses are factored into that number regardless of who pays for it (parents, insurers, Medicaid, local schools, states, etc.), but there’s another big chunk that most no one – other than parents with autistic kids -thinks about.
In many families with autistic children, one of the parents reduces their work hours or stops working altogether in order to care for their child, learn all the therapies, be their advocate, etc. I freelance when I have time, but my net revenue per year is maybe 20-25% of what I would get paid to work full-time in the corporate world.
The reality for me is that I took a 75-80% pay cut to take the greatest job in the world – being the stay-at-home dad for two awesome kids. But there’s another reality. Until there is greater access to care and serious health care and education reform in the U.S., the financial costs of all this will continue to grow more and more rapidly. So far, we’ve been lucky. I know of plenty of families on the verge of drowning.
But the J-Man is neither a statistic nor a dollar amount. If we had to sell our last pair of shoes, we’d do it. The moral of the story is, no one should have to.
We haven’t posted much lately partly because of being endlessly sick, but partly because we’re starting to become more and more conscious of the enormity of the next phase of our lives. I know this is not really breaking news, but the idea that the baby is coming soon (like 7 weeks! or so…) is finally starting to sink in. We live so in the moment around here that anything not happening in the next 24-36 hours has almost no meaning for me.
This past weekend, we went out of town on what – barring some emergency – will be the last trip we take before the baby is born. I guess it’s the idea of knowing that something is the last anything before the baby is born that makes it more real. Perhaps it’s that it gives time some definition and clear edges, like I said, something that doesn’t happen much in our hour-by-hour world.
Mary and I have this running thing on long car trips that we’ll think about baby names to pass the time, but for the most part until now it’s been a car game like “I Spy” or “License Plate Bingo”. Now we’re at the point where we really do need to pick a name. We’re down to under a half dozen first names, with a likely candidate emerging. I find myself saying the names out loud, letting my voice get used to the possibilities and seeing how I feel when I say them.
With that being our last trip, it started me thinking about how on earth we’re going to travel on our next trip – whenever that will be – now with two kids given how getting out of town now with just one feels like it takes 10 people and an act of Congress. What feels like a sea of little questions fill my head and stress me out more and more. Which side of the back seat do we put the J-Man on and which side will the new baby ride on? With the J-Man, one of us rode in the back with him on long car trips. Now, we won’t be able to. How will he react to a baby back there? How will the baby do with neither of us back there?
It’s hard enough for the J-Man to be away from home and the routine and the things he’s familiar with, though he does better and better it seems with each trip. We can now tell how much he tries to understand new situations by relating them to situations he’s already experienced. This is a very helpful skill for him to learn, but knowing that’s what he is doing is actually somewhat anxiety-making for me. I have a much better idea of what he’s thinking we’re doing even though that’s not what we’re really doing, because he’s trying to make sense of something new with something familiar. It’s his confusion that I feel stress about.
[click to continue…]
by Tim on January 16, 2009
I’ve mentioned on here before that I freelance as I have the time. My work pattern – if you can call it that – seems to be settling on nine weeks of frenzied work while the J-Man is at school and three weeks (5 1/2 at Christmas…) of getting behind while he’s on break, all thanks to the patterns created by year-round school calendars. Of course, this will all get blown to bits when the baby comes, but let’s pretend for a while longer.
I freelance in some combination of web design (more programming and interfaces than graphic design), most every conceivable form of writing, business and marketing, and really most anything related to electronic and print communication. Anyway, I had my first face-to-face client meeting in eons yesterday. I work from home and do most everything by phone and e-mail. I honestly can’t remember the last time I pitched a proposal in person.
A graphic designer friend of mine had a prospective client and wanted to farm out a lot of the programming and writing components of this project to me while she did the design and various artwork needed for it. It was a win-win since we complement each other’s skills (or lack thereof in some areas) well and probably never would have gotten the job without combining our strengths.
The proposal was for no small chunk of change, so we worked pretty hard on it. The meeting and the lead-up to it was an interesting experience for me on many levels. After living almost solely in a world of the J-Man and all of his therapists and teachers for three years, it was a nice benchmark for me to see how my personality and social tendencies have evolved over that time.
Here are a few things I noticed that are now either different or much more pronounced:
[click to continue…]
by Tim on October 19, 2008
If your child is somewhere on the autism spectrum and you live reasonably near a university, it’s not unusual to get notices about research studies you can participate in. In our case, we live about 45 minutes away from UNC-Chapel Hill – home of TEACCH and all manner of ASD resources – so we receive notices a LOT. We get them about once every month or two as the toddler age range is, not surprisingly, an important thing to study in autism. All the notices we get sound quite interesting. We automatically rule out any that are in any way invasive or excessively stressful (e.g., medication-oriented ones or ones that required a significant disruption of his normal day), but so far I don’t think I’ve seen any of those.
The one we’re in now is largely done in J-Man’s pre-K classroom at the elementary school, and the whole classroom is participating in the study. They send evaluators in from time to time, do some skills assessments, take some video of the sessions, and collect their data in a way that quite seamlessly integrates with his normal routine there. The study’s official name is insanely long, but the short version is “Autism Spectrum Disorder Treatment Comparison Study” (see link for an overview – and check out their links page while you’re there).
As I understand it, the basic gist of the study is to compare preschool classrooms that use TEACCH (that’d be us) with classrooms that use LEAP with classrooms who are ‘controls’, though I’m a little fuzzy on what the controls are doing. As I understand the purpose of the study, they are looking at what ‘interventions’ produce the most improvement in preschool-aged autistic children in these comprehensive classroom environments. There are sites in various parts of the country. Apparently it will be at least 2011 before findings are published.
I’m a huge believer in participating in education-based research studies. Anything at all that we can do to further the knowledge of how best to help our – and all – autistic children grow into the best people they can be seems like a worthwhile effort.
That said, we have a boatload of self-evaluation forms to fill out tonight as they are coming to meet with us tomorrow for an interview, see whether we had questions about the forms, etc. Among these forms are two just for the parent (yes, singular). Why they are looking for just one of us to fill out the forms – rather than giving each of us our own set of the forms – isn’t clear. As the stay-at-home dad for the past three years (even though Mary works from home now), I’m usually the one who gets to fill those out since my answers are typically more what they’re looking for. Anyway, based on the questions, it looks like they are interested in how much stress and perceived demands being a parent of an autistic child puts on us.
I was surprised about how uncomfortable some of the questions were for me. What they’re asking for is not anything top secret or whatever, so it’s not uncomfortable like if they were asking about whether I secretly enjoyed watching Bambi’s mama die to the point where I’d rewind the DVD repeatedly or not or something (I don’t, by the way). They’re more questions like, rate from strongly disagree to strongly agree, “Being a parent is harder than I thought it would be.” or “I find that I don’t have many friends anymore.” or “I’ve had to give up more of my personal aspirations than I thought I would.” or “My child does things that really frustrate me.” I guess these and others turned out to be questions I’d rather not be thinking about.
[click to continue…]
