Full Moon on my 40th B-day

I am not into astrology, but I did just flip over my wall calendar to the new month and realized that there will be a full moon on my 40th birthday. Is there any significance to this?

A few years ago, Wife and I attended a conference on autism disorder. It was not long after Moose's diagnosis. We were in a session on biomedical interventions, some of which seemed spot-on and some of which seemed a bit mystical. While I do think there are other forces "out there" that influence our lives, our bodies, and the rest of the world, I don't tend to believe in those forces to the extent that I let them guide our lives. I guess it's a balance. Anyhow, back to my point: this was a session run by three nurse practitioners who seemed very well-versed in handling a wide variety of autism symptoms and behaviors. It was a good session, and they clearly knew their stuff. However, toward the end of the session one of the presenters threw in a curve ball when discussing a certain symptom by saying something like, "...but of course all of this can change when there's something else going on, like when there's a full moon." I started laughing, thinking it was a good joke. I think I was the only one laughing in this very full meeting room. So I asked, "Can you please describe the significance of the full moon in this conversation?" All heads turned my way and started talking at once about just how many things go haywire for autistic kiddos when there's a full moon...as if I should have known this. Wow, sorry I asked!

Otherwise, I think it's pretty swell to have a 40th birthday on a full moon. We shall see.

Next Dilemma - to include, or not to include?

Wife just said it all: she does have a way of expressing my own thoughts, much of the time.

Lupron as Treatment for Autism?

Seriously?? This is the castration drug given to sex offenders.

http://www.chicagotribune.com/health/chi-autism-lupron-may21,0,242705.story

We know other parents in town who have tried to work with these "doctors." Their kids go through extensive blood tests (checking for what, I'll never know), and the people running the office indicate the tests will be covered by insurance. When the bill for $10,000 arrives, the doctors LAUGH at the parents when they ask about insurance. I'm not making this up.

I hope this article contributes to the demise of the Drs. Geier's careers, but I doubt it will.

Wife's Post: Does He Have Issues?

I was about to type out an experience that happened today, but my wife beat me to the punch.

That pretty much made the weekend!

Breach of the Fortress

Today I was on our front porch, watering new plants we finally put into the front flower bed. If the azaleas bloom, I'll take a few photos and will post them here. But that's not the focus of this post.

Moose cannot resist being close to sources of water. He's fascinated by them. Whenever I water plants, inside or out, he's always right there with me, and I bet he's analyzing the molecular properties of the water I'm using. Haha. Today was no different, but he was inside the family room when I was outside on the porch watering the new shrubs. He apparently wanted a closer look...

Now, our house is a fortress, otherwise Moose would bolt outside and risk get killed by a car. Not like he can just say "hi "to a neighbor and have a conversation about who he is and where he lives, so we keep the place locked up tight. Even most adults have a tough time figuring out how to exit (dead-bolt locks requiring a key, though the key is hanging near the door). Moose must have been watching how we exit the house, and he must have been really motivated by seeing the water coming out of the hose: As I finished up the watering process, I thought I heard keys jingling and then a key inside the door. I figured Wife was coming out to say hello. A minute later, there was Moose running down the walkway toward the driveway. I did a double-take, looking for Wife to be close behind him, but no such luck. As it turns out, she was in the back yard planting vegetables. Moose figured out how to open the damn front door all on his own.

ACK!

Man that's a smart kid we produced. We'll see how this new placement of the key works to keep the fortress secured.

Not sure how to feel on this one

Today was my day to wake up Moose so Wife could exercise this morning. He gave me a big smile when he saw me, and we had our usual morning conversation:

"Good morning, Moose! Now what do you say to me?"
"Say hi Daddy."
"Thank you, Moosey."

And then I realized that he had puked all over the bed. It must have happened hours earlier, since it was dry. Remarkably, he had missed his body, since his PJs were pretty clean. Wife helped me clean up everything while I continued onward with Moose's morning routine.

Moose has learned to stay in bed till we come get him in the morning. Not sure how it happened, but I'm thankful for this, as it's safer to have him staying in one room on the off-chance that Wife and I actually have a chance to sleep in. However, when he's really sick or something's wrong, he doesn't know it's OK to come get us in the middle of the night. I can't have a conversation with him about this, so I'm not sure how to feel. On the one-hand, I feel horrible that he slept in his own Ralph last night. On the other, I'm glad he didn't go roaming around the house in the middle of the night and risk falling down the basement stairs or something awful like that.

But sleeping in your own puke? I mean...look, it's gross. Why didn't he know this? Why wouldn't he get up and at least come into the room and get us?

He has puked two other times today. Obviously he's dealing with a stomach bug of some sort. I'm staying home from work with him. Just now he puked in the family room, and while I was cleaning it up he then proceeded to start eating his peanut butter sandwich. Personally, I can't think of eating anything right after I puke. Wow. So different. And now, of course, he seems to be feeling perfectly fine.

It's Either Hit or Miss

[unfolding portable soap box]

A rant:

I've decided that there are only a select few parents of children with autism disorder that I really like. It is definitely a hit or miss issue. It is a black or white thing (I'm not talking about race, rather it's simply an illustration of opposites). There is no in-between on this.

I see myself as one who typically looks for the bright side of things, probably to a fault (or at least to a point where I piss off the realists around me). I don't tend to dwell in absolutes, either. But with other parents of kids with autism, I have learned that they are either horrible, horrible people, or they are relatively easy-going people who are willing to lend a helping hand to another whenever possible.

We are all going through a long, rocky, foggy road with this disorder. I thought the commonalities would bind us together unconditionally. Instead, there is a constant competition on who has it harder, who has the better idea, who has the better treatment, and who can balance it all and not look like you've been run over by a Mack truck. Guess I had my standards set to high.

Why in the world should there be any competition among parents that share this in common? Why wouldn't we want to learn from each other? I suspect the answer lies within the realm of needing a locus of control. By definition we have less control over our children's progress and well being than parents of typical kids since we often cannot communicate with our children. I suspect many parents over compensate for this loss of control by pulling down their pants and crapping all over other parents, therapists, and others who merely attempt to lend a helping hand.

Well, I'm through with being nice about it. My sympathy has run out. I'm done. My defenses are up and will forever remain that way. I will assume the other parents of autistic kids are horrible people until they prove themselves otherwise. I think the disappointment in their selfishness will be easier to take that way. Then I will hold those other decent parents (yeah, like all two of them) as close as possible, so we can figure out a decent pathway on which to travel this road together. I may have very few friends as a result of this line of thinking, but at least I'll have my integrity and sanity about me.

Rant over.

[folding up portable soap box]

No more first name usage in our house

Tonight per our typical bedtime routine, I gave Moose a bath up on our second floor and was getting him ready for bed. This was one of the nights where we give him a shot of a methyl B-12 vitamin. Not a shot like in a shot glass, but a shot via a syringe in his right buttock. Typically I yell downstairs to Wife, using her first name, in order to indicate it's time for her to come upstairs and administer the shot while I hold Moose in place. 

An aside: Moose is helped so much by the B-12 shots that he actually gets excited for them every other night. Since we started these, he's much more focused on the here and now and FAR less spaced out. The pain of the shot must be outweighed by the benefits he feels because, and I'm not exaggerating, he usually leaps up and is all excited to receive his shot. Freaky. 

Now back to my story. Tonight I yelled downstairs to Wife, saying her first name. She didn't hear me at first, so I was saying it over & over again, fairly loudly, till she heard me. 

And what does Moose proceed to do? He repeated my wife's first name, over and over again, non-stop for about five minutes. I will admit, his imitation of me was perfect. Even had the questioning inflection at the end... Wife? Wife? Geez. What have I done?? 

Wife was less than pleased with Husband. Sigh. 

At least he's echoing our language. This is good. But now I know: no more using each other's first names. I don't think he knows what her name means, so hopefully this will pass. Hopefully. Not sure how we'll untrain this if it sticks around. 

Indoor Swing for Moose

Indoor Swing

Wife and I attended an autism expo here in LSC over the weekend. How nice not to have to drive 90 minutes from SCT! It was only about 10 minutes from Chesterley. We're still getting used to all this. The place was PACKED with agencies from all over the place, and tons of people. Some even brought their children; thankfully we had our trusty sitter at home with Moose.

Anyhow, we've had our eyes on some sort of indoor swing for some time. The act of swinging is theraputic for him, as it calms him down and keeps him level-headed. If he swings or does some other physical activity, then he can be more focused when going to school or learning other speech-related things. This is part of his "sensory diet," that he needs to feed each day. We have a great play set in the back yard, but he's not been able to go out there since last November due to the weather. The company that manufactures the indoor swing system was at the expo, and everything was literally half price. So we picked one up, and I assembled it Saturday afternoon. He LOVES it. These shots were taken minutes after the assembly was finished. There are a couple of other accessories that will be shipped later in the week, so I'll probably post more pics then.

We had planned on setting this up in the basement, where is actual play area is, but the doorway is two inches too wide. So, we choose the kitchen/dining room doorway instead. The bar can be removed pretty easily when friends come over for dinner (the blue supports remain, but I'll try to get over it). Sunday morning when I was cooking breakfast, he was swinging and watching me. That's different: the "watching me" part. It was almost like we were having a conversation while I made him breakfast, and that was way cool. When I was finished, I said, "OK Moose, come sit down and eat your breakfast." And he did with no protesting, no hesitancy...just following directions. And he was smiling, too. Wow. Anyway, click on the photo above to see a small set of shots of the swing.

Moose Droppings

Happy New Year!

If you are uncomfortable discussing human fecal matter, then you won't want to read this post. Another point of view: You probably take a dump excrete solid waste at least once per day, so just get over yourself and read onward!

Many of you know that Wife and I have had Moose on a couple of experimental dietary interventions designed to help persons with Autism Disorder. First was a gluten-free/casein-free diet (GFCF) that eliminated all wheat and dairy products. Next was a more restrictive diet called SCD, or specific carbohydrate diet; this one eliminated EVERYTHING (I'm not kidding) except meats, some nuts, fruits and vegetables. Wife has written much more about these things in her blog. Also, she did a FANTASTIC job making much of Moose's food from scratch for the past year. God bless her.

Many children with autism also suffer from physical issues affecting the gut, so these kids tend to be irritable, gassy, just a mess. Moose never had those symptoms prior to starting the diets. Instead, he was just sort of spacey. But in December of 2006, we were finally making progress with potty training, and physically he was really doing quite well.

And then we started these diets on January 1, 2007.

Where most of the success stories heard discuss how kids with lots of diarrhea and gas see vast improvements very quickly, our Moose ended up getting diarrhea for the first time. It got to the point where we actually went BACKWARD from having him in training pants to being back in Pull-ups. He couldn't control the defecation, and we couldn't keep up with keeping those pants clean (our water bill literally doubled one month with all the extra laundry we were doing to wash those training pants...again, I am not kidding). It was not fun, especially for Moose. However, we didn't want to leave the dietary stones unturned. We felt it was necessary to stay the course for several months and see if the diet would eventually have an impact on his autism symptoms. Well, ten months later, he still had diarrhea and was still in Pull-ups at age six. He made vast improvements in his speech and general awareness of the world. However, those can be attributed to increases in the Verbal Behavior method of training kids to speak along with periodic injections of Methyl B-12 (yes, we inject our child every three days. No, he no longer cries. In fact, he actually helps us to administer the shot now). According to pre- and post-tests of the yeast and bacteria levels in his blood, the diet has done absolutely NOTHING to help him. In fact, the yeast & bacteria levels were slightly elevated after 9 months on the diet.

Over the past month-and-a-half, we've slowly pulled the plug on the diets and had him eat 'normal people food.' Last week we re-introduced wheat for the first time in about a year. Moose didn't excrete any 'solid' waste (not that diarrhea is solid, but you get my point) all day Thursday AND Friday. Hmm...

Late this morning I was practicing the piano. Wife hardly ever interrupts me when I'm playing piano. But out of the corner of my eye I saw her standing there, holding a full diaper (folded up). And over the rather loud passage I was playing, I heard her yell, "It was NORMAL." I stopped playing, and my jaw hit the keyboard, right on the C# (now I'm kidding). The first time he craps in 48 hours after a week back on wheat products, the kid takes a regular dump.

So, once and for all: the diet is not a silver bullet for all kids. It works for MANY, and I don't deny the good improvements that thousands of autistic persons have gained on this plan. It just doesn't work for our kid.

But saying "the diet doesn't work for Moose" is like saying "hiking a mountain doesn't work for a fish." The fish still swims really well! Well, in the past month, Moose has been interacting with us in ways he's never done before. He cried when his relatives left our house after Christmas. Cried. That means he felt a real emotion! Also, he hugs me now instead of just going limp when I pick him up. I grew accustomed to my child not really giving me much affection in return; I didn't take it all that personally. But now he hugs back. Amazing. That's not something I could teach him. That's something he just does now. And it all started when he started eating food again. People food. We can attribute recent improvements in his behavior to being OFF the diet. Not the reverse. Amazing.

Fine by me! We'll take it.

Christmas Morning Musing

I'm up pretty early on Christmas morning. I'm the first one in the house who is awake, actually. A rare thing for me since coming back to school and pulling some nite-owl sorts of hours. I do miss the early morning thing, though, so perhaps I'll get back in the routine of being the first one awake.

Christmas has some mixed emotions for me this year. On the good side, I still cannot believe we're here in LSC and I'm working in this particular job. It doesn't seem real to me, probably because I have not yet finished the task (i.e. the doctorate) through which I had planned on obtaining said job. That's the bad side: Study #07- 11947 continues to loom overhead. In fact, just thinking about it is what woke me up early today, I will admit. I suppose that's a good thing...nothing wrong with some negative incentives to get the f-cker done.

The other thing that weighs heavy on the mind is, of course, Moose's autism. I go back and forth on this. On the one hand, his autism is part of him, and I love all of him unconditionally; I almost hate to want a core part of his being to disappear. On the other hand, I want for him a normal existence. For example, I wanted him to be up front during our church service last night with the other kids. That was almost painful to watch, knowing he was at home with his aunt.

Generally speaking, I wouldn't change a thing about my present day-to-day existence. I will continue to plug away on the dissertation, and I will hopefully finish in 2008. The autism...well, I'll just learn to deal with that as time flies by. No use in wishing for something that simply isn't going to happen in this lifetime. I've not much to complain about in general, but during these early-morning reflective times I bring out some of the more painful aspects of life to hopefully have them then settle back into the larger scope of life more smoothly. Perhaps these individual aspects of life won't be as painful if I sort of raise them up, look at them upside-down, and then let them rest again. Sorta like taking fish out of water for a few seconds, stressing them out, and then putting them back in the river. They still keep swimming, going with the flow...

Wow...my mind is making some pretty strange images right now. Better get some coffee in me and get ready for Christmas morning. Ah, I hear others stirring upstairs now. Bye bye early morning solitude.

Dissertation Week 2007 - Day 4 Report

Day 4 sucked. I had numerous technical problems that took over too much of my life: a furnace repair in the morning, a new starter for The Fucking Jetta, and more software installation problems.

And then Wife and I experienced an enormous problem in our back yard. Some idiot meter maid left one of the back fence gates open. Chester escaped. Fortunately, Wife saw him on the wrong side of the fence before he got too far, and he's perfectly safe. I'm glad it wasn't Moose playing outside, or else it's pretty likely he would have run away and gotten lost and/or killed by a car. Your typical six-year-old would tell you the gate is open, or he would know that cars are inherently dangerous to pedestrians. Mine would not. Our house is practically a fortress, and we've spent a chunk of money making it as such (the new fence, deadbolt locks on every door with the keys out of reach, etc. etc.). But when an idiot enters the system, it quickly all goes to hell.

This action of course prompted me to make phone calls to all our utility companies to see if they could put a note on our record to close the gates when they check the meters in the back yard. For the most part they were compliant, and even apologetic, for any angst they may have caused. Most understood the importance of why I was calling without my having to explain it. It was encouraging.

However, customer service at My Phone Company was provided by idiotic humanoids. The conversations went something like this:

"Your Phone Company's customer service center, how may I help you?" she asked.

"Hi. I have a special-needs child at home, and we have a fenced in back yard to keep him, and our dog, safe. A gate was left open today; I'm not sure by whom, but my dog escaped. So, I'm calling all of my utility companies to ask if it is possible to have a general note placed on my account indicating that the gates must remain closed at all times if they enter our yard to do routine work. Can you help me with this sort of thing?" I asked, courteously.

"No, but I can transfer you to someone who can," she replied, happily. Why did this make her happy?

"Great, that would be helpful. Thank you," I said.

"OK, but before I transfer you, I see in your file that you are eligible for a random free upgrade to a cell phone package you neither want nor need. Shall I get one of these phones to you in the mail within 2 business days for you?" she asked, sounding too cheery for my taste.

"No thank you. I am not interested in upgrading any of my services. I am calling to get a note placed on my account in order to protect my son from escaping from our back yard," I said, slowly losing patience.

"OK, is there a reason why you do not want to upgrade your services?" she questioned.

"No (are you kidding me??). I am perfectly satisfied with my phone service. As I said, I am not calling to upgrade my services. I am calling to have a note placed on my account regarding my back fence so that my autistic child does not get abducted or killed by a car." My tone was no longer courteous.

"OK, but before I transfer you: Have I answered all of your questions today?" she asked, perkily.

"No, you have not (and you are dumb as a post)."

And then she cheerily transferred me to the repair department, for whom I waited about ten minutes. He then brilliantly transferred me back to Customer Service again after not being able to help me. I finally spoke with someone who had a brain cell and got the damn note placed on the account. And then I re-checked the status of the gates before I collapsed in exhaustion.

You can't deny that my priorities are in line. Securing those gates was far more important than progress on the dissertation. I'm pretty thankful I was home today, actually. Guess I need to have three signs made that indicate something to the effect of: "Close the Gate Behind You, Moron." If you have any suggestions for how the signs should read, I'm all ears.

Approaching Normalcy

Well, I really do laugh in the general direction of normalcy. After all, "My kid's autistic...what's you're excuse?" (that quote from a really funny series of t-shirts my sister-in-law found).

But what I mean is this: I'm now officially one week into working full-time, and I actually didn't fall asleep at my desk even once! haha (after not having an 8-5 job for five years, I was a bit worried about making it through the day in one building. Well wait a sec. I suppose I did that most Saturdays for the past year as I wrung the first half of the dissertation out of me like trying to obtain water from a dry sponge, but for some reason a full-time post feels different). Things are coming together quite well. I spent these past few years as one of about 25 researchers, all with slightly different views of conducting research and sharing the results. All part of the academic process, I suppose, and the argumentation was "fun" in an odd sort of way. Now I've entered a division of practitioners whom I respect a great deal, but researchers they are not. Suddenly, that's "my" job to assess things and help them improve. I went from being one of many to being one of, like, TWO. Fortunately the other researcher type appears like he'll be a good colleague. He gave me a good reality check the other day. I suppose it will be a good change to be one of just a few instead of one of many. Suffice it to say the transition is going just fine. Almost feels like "normal."

The other part of finding normalcy is that I've finally started back in on the dissertation after about a month away for the move and finishing up the GAship. I communicated via e-mail with My Committee about where things stood prior to the move. DC provided some more advice on how to recruit more participants. Oh yeah: funny thing happened. I was hoping to interview between 8 and 12 participants. I was able to find 9 pretty easily. All but one showed up for the interviews, which was pleasantly surprising. After the initial rush of interviews I looked more closely at the demographic breakdown of my participants. Hello...SEVEN of the eight are men?? And I didn't notice this before because...? Ugh. If this were a study of men, I'd be set. But if I don't find more women participants, then I'll be chucked in the student development gender oppression trash can with the rest of the higher education theorists from the 60s and 70s. Not a good way to start off as a researcher, eh? So, my goal is to recruit about four or five more women who qualify for the study and are willing to talk to me about college for about an hour. Not an impossible task, right? How the hell did this happen when there are far more women in higher education than men? Oh well, I could have worse problems than this. And I feel better now that My Committee is aware of the situation and hasn't fallen over in complete disbelief.

Related note: Pink successfully defended her dissertation last week! Congrats to her! Very inspirational to the rest of us.

Normal has not been achieved on all counts just yet. Moving to a new town is challenging for Wife and Moose...they have no built-in way of meeting people the way I do at work. Not easy. Today Wife is attending a nearby church to check it out for us. We can't all go, since Moose needs to be either in the nursery or with the other kids his age accompanied by an aid. We are the natural aids for him in this situation, but then one or the other of us cannot attend the service. Normally church nurseries are for kids up to age 4, and he's almost 6, so we can't just walk into any church cold without having made prior plans. Again, "my kid's autistic, what's you're excuse?" Normal is different for us. I am not complaining or asking for sympathy. Rather, I'm just stating the facts. Wife will go to church today solo and will let me know how things go. Seems like a pretty interesting and progressive place, according to their Web site, so we shall see. If she likes it, then we'll phone the minister next week and see if we can make arrangements for Moose to hang in the nursery with the toddlers. We're hoping to find some family normalcy pretty soon, but we know it takes a while.

A Basic Question

Last July I officially started my current job, which was essentially a promotion from a 50% FTE graduate assistantship to a 75% FTE graduate assistantship with supervisory responsibilities. The money was "good," and as a result I had no need to take out another student loan. The money was not "great," but for 30 hours per week, I had no complaints.

However, I am still on the student health insurance plan. The alternative, had I been hired as a true 75% staff member, was no insurance coverage at all. So, I was thankful to have been hired on as a grad-student at the salary I'm receiving, and I thought the student insurance plan was OK. Not great, but OK.

Moose wasn't on this plan last year. He was on a state-funded plan for which we qualified because our income was so low. This was a wonderful insurance plan, especially for a child with special needs, as it covered just about everything with no premiums or copay. Don't get me wrong: I'd rather not qualify for the plan due to high income, but I do miss this plan. We took him off the plan January 1.

Today we learned that the speech and occupational therapy (OT) he receives every week has not been covered since the start of the new year. Earlier in the year when we were deciding to switch him to this "student" plan, however, Wife called the insurance company to verify coverage, and they said "autism is covered." However, what was not clear was that they only cover "medical" expenses for autism, and not speech and OT. Speech and OT are only covered expenses if they are restorative. So, if I had been in an accident and needed to relearn how to use a fork, that OT would be covered.

Moose has never been able to speak. OT has taught him how to do things that other kids just learn, like using a fork, for example. My basic question: how is it that therapies provided by a hospital, and prescribed by a doctor, are not medical expenses realted to autism?

We are appealing, and we hope this turns out OK. But, what if it does not? Do we cancel therapies till we hear? The appeals process takes 30 days.

These insurance plans are designed for students, who typically are healthy and normally-functioning individuals. I mean, they got into college, after all. The plan covers prescriptions, doctor's visits, etc. That's all well and good, but when you realize your child has a mental disorder during a five-year stint as a graduate student, it'd be nice to at least be told what questions to ask in this regard. We would have found another plan or found another way to get the therapies had we known...

I may not have taken this job had I realized these essential things for Moose's care were not covered. On the other hand, this job has probably helped lead toward some bigger and better things (more later on those). I'm torn. Am not sure the money was worth it.

Chemistry Experiment

We took Moose to a specialist yesterday because we have him on a gluten-free casein-free diet (GFCF). For those of us not in the know, that's basically wheat-free and dairy-free food. Apparently, many autistic kids have a high sensitivity to these foods. There's gluten in a whole bunch of things, more than you'd suspect. We're thankful for a good organic food section at Chain Grocery Store Near Our House (CGSNOH), along with a natural food store elsewhere in town. Autistic kids' food sensitivities manifest themselves on two ends of a spectrum (this is my own lay-person's representation of the problems [I need visuals], so it may be incorrect):

physical gut problems <----------------> aloofness or spaciness

Moose falls, of course, on the "aloofness or spaciness" side of things. The specialist would argue that he's essentially getting high on drugs from consuming gluten and casein products.

For a long while, Wife and I balked at this entire notion because Moose didn't have any of the gut issues, which is the more-common problem. He eats a variety of foods, and his digestive system was always just fine. He sleeps through the night consistently. We were skeptical of anyone trying to say that a diet will "cure" autism.

But we decided to try the diet anyhow because we just didn't want to leave a stone unturned in this journey. This specialist agrees there is no cure for autism. However, her Asperger's-syndrome daughter has had a great deal of success on this diet, and the doc has been working in this area for more than a decade. "Success on the diet" is defined as a reduction of autistic-like repetitive behaviors and an increase in communication skills (in addition to getting rid of any physical problems, that Moose doesn't have, fortunately).

The visit to the doc yesterday was very interesting. After reading Moose's history (Wife has had to write out the details of her pregnancy and Thomas's entire life at least 15 different times, by hand, no exaggeration), the doc told us WE'VE BEEN DOING EVERYTHING RIGHT. I think this is one of the first people we've met who believe in the "the environment is out to get us" sort of stuff who has said that to us. Wife needed to hear that. Along the way others have questioned us about vaccinations, rho gam shots, flu shots during pregnancy, and other stuff...all of which were things our doctors told us to do. This is one of the first people "in the know" who told us we hadn't done anything wrong. Very refreshing.

Next, she immediately saw a few things in Moose and pinpointed the likely cause. "He grinds his teeth a lot," she observed. "Yes, he's done that ever since he grew teeth," I replied. "Well, it's probably due to an overdose of yeast in his system, I've seen that a lot." Who knew? So now he'll be on some drugs to help clear the yeast out of his system. OK, we'll see how that goes.

There was an iodine test. That's the yellow liquid stuff that stains your skin for up to 12 hours. The test was that if it absorbed into his skin in less than 12 hours, then his body is craving the stuff that's in iodine. (side note: his skin was back to his normal color in less than four hours, so I guess he's deficient in that area, ya think?)

And then they drew blood. Six vials, for all sorts of chemical tests. Apparently he's a walking chemistry set. After I had to gently, yet firmly, say to the nurse, "He won't understand you when you tell him to hold his arm still," we worked out a system where Wife held Moose down underneath her, I held his free arm, and two nurses helped to draw the blood. We had him in a sing-a-long/scream-a-long, and I think it helped to calm him down, a little. They had to stick him in TWO separate places in the same arm, but they eventually got almost as much blood as they needed (god I hope it's enough). A few hundred dollars later (I suppose he's worth it, haha), we were driving back to SCT peacefully, Moose was sucking down juice and GFCF pretzels, back to his normal self. Wife and I, while shaking, were at least relieved that we feel we've found a specialist who really understands all this stuff. Moose is really a trooper, truly. A very brave kid.

I feel like we're at the bottom of a very steep hill and are learning how to get the car into first gear without rolling backward. But I think it's the right hill, and we've been searching for the this hill for a while. We shall see. We'll try anything that has no potential of hurting him. I just hope he doesn't have to have another blood test anytime soon.

Dissertation? What dissertation?

Happy New Year

Happy New Year!

We had a fun time with some friends over here at Chesterley last night. Laughed and ate and laughed and ate till we kicked everyone out at 12:15 AM since Moose has been waking us up extra early lately. A good time was had by all.

Check out Wife's latest post for a good description of our trip out for lunch with the same group of friends. I no longer really care all that much about others' reactions to Moose when we're out and about. I'm proud of him and I'm not afraid to show him off, odd noises and funny hand motions and all. I'm also thankful for the good friends who understand all this stuff and a few accepting people we happen to meet when we're out & about.

Circle of Support - 1st Meeting

On Wednesday night we had the first meeting of Moose's Circle of Support. I wrote about this a while back. It was an amazing experience. One of the many things Wife and I recall from our wedding was the incredible feeling of support we felt from our families and friends who gathered from all over the country for the event. In many ways we felt a similar feeling the other night when the Circle got together for the first time.

Similar to the wedding invite list, it wasn't easy to determine who we wanted to invite to the circle group. Many of our good friends are not in this group, and it was tough to make that decision. But we wanted the members to have developed a good relationship with us AND with Moose. There are a couple of exceptions to this. A woman at our church has a 40-something-old son with Autism. She doesn't know Moose very well, but her words have always been inspirational to us. She raised her son here in SCT, so we figured she'd be an interesting addition to the group. She was true to form in the meeting: truly inspirational! About 18 people came to the first meeting, and the ages range from 14 up through about 80. Really fascinating group of people.

What's been sticking with me is this picture and the meaning behind it:


We ALL have circles like these around us. The first circle represents those closest to us, like our close relatives, our partner, or our very closest friends who know all the deep secrets about us. The second circle is our group of friends. The third circle represents the activities in which we participate; for me this is my church choir, the office where I work, organizations I belong to, and so forth. The fourth circle consists of those you pay to be in your life, like our doctors, dentists, the plumber, the dude I need to hire to clean my second-floor gutters this fall...

So who's in your second circle, and even in your first? How did you meet them? Aside from your family members, you met your people in your third circle: the things in which you can participate.

For an autistic person where social skills are comprised, the ability to join in a third-circle participatory activity is compromised as well. How will Moose make friends? Will he date? Who will hang out with him? And MUCH later on down the road (hopefully), who will join his circle of intimacy after Wife and I die? Well, let's face it, he would have to rely on Circle 4 folks: those we'll pay to help him out along the way. That's all well and good, but his caregivers will want to go home at the end of the day and be with their own circle 1 and 2 people, so where would that leave Moose? What kind of life could he lead?

The main point of the Circle of Support, therefore, is to help create a life of better quality for Moose. It's to create a group in which he will be able to participate, eventually. It's to help him build up that crucial Circle 1 and 2. And, frankly, it's going to allow Wife and me to maintain a Circle 2 ourselves. There are times we feel our closest friends are Moose's caregivers, because they "get it." But we realize the more friends we can have on board in this circle, the more they will "get it" too. And that will make all the difference for us, and for Moose.

We are blessed with a fantastic facilitator, a woman who has been part of numerous types of these Circles for many years. She anticipates our questions and can go with the flow no matter what happens. And the funny thing is: she already knew four or five of the members in our Circle, mostly due to personal friendship connections and not just her own professional ones. Amazing, the coincidence of that! She's quickly becoming a good friend to us.

So it was a very big, very emotional evening, and we're excited for all the possibilities. The group will meet only about once per quarter, but we'll keep in touch regularly via e-mail and our every-day lives. I'm not sure we'll ever want to move away from SCT, since this Circle of Support would take years to create in a new town. We feel like we're in the right place at the right time. Not quite sure how that happened, but I'm not going to question it one bit!

Wife's Blog

I now introduce Wife's very own blog site: http://chesterleyschild.blogspot.com/ . Already she has two posts as of last night, and I'd say she's doing quite well.

Circle of Support

We're forming a Circle of Support for Moose. I just finished up a meeting on this a few minutes ago, and I need to get my thoughts on this out of my head.

The goal of a CoS is to form a group of friends who will "be there" for our son throughout various aspects of his life. But these are more than just friends. Instead, this will consist of others who are willing to actively participate in fostering his growth and integration into mainstream society.

We realized a while ago that while we attempt to provide a great deal of support and innovation to encourage Moose's development, we know there is always "just a bit more" that can be done. That gets extremely overwhelming, as we start to feel that if we don't provide every last thing we can provide, then we're doing Moose a disservice. Now, we try to keep all of this in perspective and not beat ourselves up about the pressure we feel, but it's tough to keep it all in perspective.

The CoS, I think, is going to fill in a couple of gaps for us. First, there will be many other minds involved with creating ideas to help out with the fostering of Moose's development. Perhaps we'll feel like we're not missing opportunities and such. Second, it's an organized approach to helping us help Moose. We know we're not alone in our interest to support him, but this is yet one more thing we can do in an organized fashion to provide a sense of community for him.

(And for us.)

The first meeting is going to be next month sometime, and the group will consist of his teachers, therapists and friends that we see here in town on a regular basis. I'm sure the group will grow with time and will eventually involve his own friends and classmates. It's pretty exciting to think about all of the future possibilities.

Mini Me

Mini Me
Originally uploaded by chesterley.

Thought this was a cute picture from yesterday morning. Moose has been making a ton of good connections lately, and he's really beginning to follow directions well. Last night when I brought him upstairs for his bath, I gave him directions of each task to do in turn, and he did them all (e.g. take off your shirt, take off your pants, hand me your pants, walk into the bathroom please). I really couldn't believe it! We've had him in a couple of intensive language programs this summer, and we also enrolled him in a really fun summer camp at our local Young Men's Christian Association (I hate acronyms). He's made a lot of progress this summer, and it's been cool to watch!

I can't believe he starts school again a week from Wednesday. Where has summer gone?