Harry Potter

Katherine and I went to see Harry Potter and the Half Blood Prince last night, leaving Daddy home with the twins. Caroline really is not into Harry Potter the way Katherine and I are, and Rob could pretty much care less. I can't even get him to read the books. Still, K and I enjoyed our night out, though the plot of the movie was a little confusing to an 8 year old who has only seen the movies and not read the books, so there was a lot of explaining to do. Ben has been doing better, seeming to have finally settled into his summer schedule. He completed his second week of school last week and it runs though the end of the month. August is looming before us and it will probably prove to be a trying month. I signed the girls up for one more half day camp the first week of August, but I am seriously counting the days until we can leave for our Outer Banks vacation and head back to school the week after. Ben visited Dr. Compart the beginning of this month, and she said that she definitely noticed a difference in his demeanor. He was much calmer and didn't show his aggressive side at all, a marked improvement. She recommended adding a few more supplements to help detoxify his body and control yeast, which I am adding slowly to his regimen. Last Monday he had his MRI and EEG done at Walter Reed, along with several bloodtests, including a chromosomal microarray. We'll see what comes back in a few weeks, though frankly, I'm not expecting too much.

Ben Has a Thing for Shoes. .. .

Once again Ben had emerged from my bedroom wearing my shoes. Or Rob's combat boots. I've really got to get a picture of this and post it. What's especially funny is when he comes out wearing one boot and one sandal. It's his version of dress up, and he only does it with adult shoes. Cute!

Throwing My Weight Around. . .

I saw this kind of post on one of the forums that I read and I thought it was funny. So here it goes . . . Famous People with whom I Have Loosely Come Into Contact:

1. My mother knows Gerald McRainey's ex-wife's mother. Before he married Delta Burke.
2. My dad played golf with Meredith Viera's brother.
3. I spent the night in an apartment that was once rented by Gwyneth Paltrow, back when she was dating Brad Pitt.
4. My husband once saw one of the N Sync guys in the jon.
5. I used to think I was related to Ulysses S. Grant, but since I've done some family research, I don't think that's true anymore.
6. My dad once took the place of Lee Trevino in the Senior Open.
7. I've seen Billy Joel, Elton John, Harry Connick Jr., Bryan Adams, Foreigner, Garth Brooks, Shania Twain and probably some other performers I am forgetting in concert.
8. My husband once asked Harry Connick Jr. a question and was actually answered.
9. Saw Joe Lieberman in Georgetown once, and I'm pretty sure I saw Alan Greenspan at the Tyson's Corner mall.
10. I once annoyed John Updike.
11. I saw Bill Clinton, Nancy Reagan, George W. Bush, George HW Bush, Jimmy Carter and Gerald Ford from very far away at the opening of the George HW Bush Library at Texas A& M.
12. I've visited the graves of George Washington, Thomas Jefferson, and John F. and Robert Kennedy.
Edited to include - 13. My mom just told me that my dad said that my grandfather played semi-pro baseball in Minneapolis.
and 14. Powers Booth!!! How could I forget him? Played Cy on the HBO series "Deadwood". When Rob and I were in Paris on my 32nd birthday, we took a dinner cruise down the Seine and he was on it! We said hello at the end. :-)

I'm sure there's more that I'm forgetting, but none that pops into my head. This has little to nothing to do with Ben, but I thought we all needed a break. Summer school starts next week. Hooray!

Settling Into Summer

Ben has begun work with his new therapists, and has continued to ride on a roller coaster of emotions during the day. Yesterday was not one of his better ones. I had about had it by the end of it. After tormenting his new therapist for three hours, he seemed reasonably stable, so I had the bright idea to swing by the library so that Katherine and Caroline could sign up for the reading program. The idea was a sound one, as we have taken many trips to the library before this and been okay. Although we did get the girls signed up, we had to make a quick exit when Ben decided that he was NOT waiting for the girls to pick out any actual books. We did hurriedly get a few, and I could feel the entire staff of the library breath a collective sigh of relief when we finally left. Ben even got signed up for the book program too, and so far, with a total of two books having been read to him yesterday (Green Eggs And Ham and The Spooky Old Tree if you want to know), is winning the reading program contest. I am crossing the proverbial fingers that he will stay upbeat and happy today. I'll be heading off to NYC this weekend with the girls and leaving Ben alone home with dad. We'll see how it goes.

Dear Ben,

I've forgotten how fun you are when I just sit down and play with you. You were crying this afternoon, on the last day of school, after I had taken you and Katherine and Caroline to Wendy's. I thought Oh no, it's already begun. Crabbiness rooted in boredom, and your crankiness makes me cranky very quickly. Poor girls. It's not their fault they have a crank for a mom and a crank for a brother. But I made a decision and brought you up to your bedroom and blasted some of your favorite music from your boombox, and I let you decide what we'd do. The only rule was we had to stay in your bedroom. At first you cried harder and didn't want to do anything but escape. I just lay on your floor. Finally, you sat on top of me. After that, you calmed down and let me play a couple of things with you. We laid on your bed and went pretend "ni-ni". We took turns putting blocks on top of one another and I showed you how to knock them all down. You dumped out all your elephant links, but you decided you didn't want to play with them so we put them all away. We just hung out together. And before we knew it, it was 4 o'clock. Time for your therapists. Your mood was much better by then, and so was mine. Perhaps we are too much alike. You are my baby boy and I love you. P. S. It was so cool when you said "mama" today when I was helping you change your clothes. Could you do that again sometime? Love, Mom

Busch Gardens is Ben's Personal Hell . . .

and we forced him to go back. If you want a refresher of how Ben did the last time we took him and the girls down there, just look up June 2006 here in the archives. I think Ben had finally recovered from the last time and here we go, dragging him there again. I mean, come on, isn't 3 years enough time? It was Free-Military day a couple of weekends ago, so we made an overnight trip, much to the delight of Katherine and Caroline, who btw, thoroughly enjoyed themselves even if their brother didn't. It one of the very few advantages to having a disabled child that most theme parks seems to be very accomodating towards our family once the situation is explained at their guest relations area, and we can bypass most lines using the handicap accessible entrances. We didn't push Ben on any scary rides this time, but took turns watching him while we rode with the girls, and in some cases, by ourselves. He balked at the Grover themed roller coaster in the Sesame Street kids area and almost tore the hair off of Rob's legs during the ride, so we thought better of it and only made him go in the River Ride (once!) and the sky ride (purely for transportation purposes, I swear) . He more or less forgave us and mellowed out as the day went on, obediently using the public potties when asked, and enjoying the German Ooom-paa band that played for us while we ate dinner. All in all, this trip wasn't quite trumatic experience that the last one was, and he's still riding his bus to school without fearand isn't suddenly afraid of baths or haircuts. Still, he's now terrified of riding his little green bike again (sorry therapists!) and was quite wary of the pool yesterday, but warmed up to it after a few minutes. I think we hit a happy medium.

It's 6:10 am and I can't sleep anymore . . .

I've been up since 5:30. I guess this is what happens to you when you get older. You forget how to sleep late. I want to sleep late, I really do, but I can't. Old habits are hard to break. Katherine had minor surgery at the Army Hospital yesterday and has come out of it well, so she and everyone else is going to be headed off to school this morning. The doctor had to sedate her with laughing gas to remove the back of an earring which had completely been swallowed up by her ear lobe. Noone ever tells you things like that can happen. So I'm hear to warn the world : check your child's earrings every single day and wear safety backs (those big plastic round ones). On a happier note, Rob, the kids and I joined a pool. It's a public pool here in Alexandria, and we went ahead a bought season passes because it was just so cool. It's run by the park service of Northern Va, but it's probably the coolest pool I've ever been to outside of a water park. There's a huge wave pool, a play pool that perfect for the kids with two waterslides in it, and there are three HUGE "straw pipe" slides for the people who actually know how to swim. Ben spent about 30 seconds being shy of the pool, lurking around the edge, touching the water with his toes, before he lost all inhibitions and picked up right where he left off last summer. That boy can swim, though I don't think he's consciously trying to. He goes under water and dog paddles, and for the most part, get along really well. He even went on the water slide with Rob and I twice! The girls still have a thing about dunking their heads, but had a great time playing on the slides too, after Caroline convinced Katherine that it wasn't so scary. We had a great weekend.

Nothing Profound, Yet All Is Well

Rob's back from Mississippi and for that we're truly grateful. Ben is still doing well on the potty, and all in all, things are as good or better than can be expected. Things are starting to come together for the summer, and I expect Ben will be in summer school for the month of July. He'll be getting 3 hours of therapy four days a week as well, so it looks like it'll be a busy time for him, unlike the two previous summers. I firmly believe that, like most other autistic kids, Ben needs as much structure as possible for as much of the day as is feasible. He is simply unable to entertain himself in a normal way. Even on a short trip to the bus stop or walking out to the car, his compulsions take over. But if he's busy, his spitting definitely decrease. On the whole, over the past few weeks, he's been exceedingly happy. He wakes up cheerful most mornings and has been sleeping well, in fact, yesterday he slept until 8:30! I'm looking forward to a constructive summer for him and the girls, who are enrolled in two week long day camps and an art class. Ben loves to swim, so I'll try to throw some of that in there too. That's all for now.

Could it be?

Could it be? At last? Ben is finally.. . mostly anyway. . . . potty trained? I didn't want to post too soon, but he's doing incredibly well. Goes to the bathroom on his own and has very few accidents. I am so psyched. My grocery bill has finally gone down! No more diapers (except for the night ones)! I don't want to get into all the gory details, but let's just say, I'm pleased. He has an appointment with the neurologist on Tuesday and we'll see what happens with that. I think Ben's in for some more blood tests courtesy of his DAN doctor. Poor little guy!

I'm Blue, Air Force Blue, As Blue As I Can Be . . . .

For those of you who don't know what I'm talking about, the reference is from a 50's song, Navy Blue, by Diane Renay. I'm in a moderately blue kind of mood but I'm trying to be lighthearted. Right now as I type Ben's come over and tried to put the ear buds of my ipod on his ears. He knows music is supposed to come out of it, but I have it on pause. He's got my old ipod, which is now mostly his, and I've filled it with "his" music. It's so cute. But still, he'd rather have mine. Rob is still in Mississippi and I'm still holding down the fort. The end is in sight now, and hopefully the AF doesn't get any bright ideas about making him stay longer than May 15th, which they've been known to try to do. The kids are out of school this week and we'll be making the trek to NC later this week. 8 hours in the car with a broken DVD player and 3 kids won't be no picnic, that's fer sure. Sorry for the temporary lapse in spelling and grammar (slaps self). I've been trying to keep sane and the weeks only just started. Ben is still in pull ups this week because I think trying to keep him in underwear the entire week by myself just might do me in, and we certainly wouldn't want that. He's gone to use the bathroom several times by himself in the past few days, which is certainly a promising sign. I think he had a little gluten last night because there was a rather large bite taken out of one of the bagels. Good thing about Ben, he doesn't know when he's being obvious. I also saw him going into the kitchen and running out of it giggling, and of course, he had found the shredded cheddar and was grabbing small handfuls of it. He finds dietary infractions so funny. Alas, I do not. He woke up at 3:30 am last night and NEVER WENT BACK TO SLEEP. Mom did, however. He stayed upstairs in his room and by the time he came downstairs, it was 6 am and I had given up and started a pot of coffee. I drink the Half Caff these days because excessive caffeine does nothing to enhance my already winning personality. Still, I'm sure I could use more sleep. Maybe I'll start going to bed at 8, when the kids do, and that way I'll be prepared for these kind of mornings.

Wednesday Morning - off to school!

Ben has started potty training at school and at home yesterday with his therapists. He's had some success, but also some accidents. He doesn't seem to get the fact that he is supposed to put himself on the potty and not wait for someone to tell him to do it. His therapist told me to keep a pull up on him when he's not at school and/or in therapy, but keep taking him to the bathroom every half hour or so. Sometimes it works, and sometimes it doesn't. Right now, he doesn't seem to care whether he's wet or not, even when wearing underwear. I had kind of a rough morning with him and I'm still recovering. I woke up myself around 3 am and couldn't get back to sleep, though I desparately wanted to. At 5, I heard Ben wake up and try to come downstairs. I brought him back to his bed and told him it was still nighttime and he couldn't get up yet. He accepted this the first two times I did it, and I was able to lounge in bed until about 5:30 before he tried again. This time, he threw a major tantrum when I tried to put him back to bed. He was so loud and angry I'm very surprised the girls were able to sleep through it all. He broke one of my coffee cups by throwing it on the kitchen floor and dumped the water bowl. I felt pretty patient with him as I tried to calm him, but maybe I was just tired. He finally calmed down with the help of some of his favorite music, and sat on my lap for a while, cuddling. While he sat with me, I thought about what's going to happen if he does this when he's 10, or 15. He'll be a lot stronger then. Hopefully, we'll be able to improve his coping skills. If not, I'm afraid we're in for it.

What to do with the little guy

Poor Ben, though I suppose he thinks he's getting away with something. He's only had one day of therapy this week because his therapists have both been sick. Coupled with him being sick last week, and the snow, he hasn't had to intensely work at anything in quite a while. Other than school, that is. Next Tuesday begins his big potty training week. I'm going to bring him into the lab at the army hospital for some blood work first thing on Monday morning, and let Rob put the girls on the bus. He's got a whole slew of tests that Dr. Compart ordered and she's waiting on the results. The next day, it's in for the long haul! His school and therapists are going to try to teach him to go to the potty when he needs to, so that he isn't prompt dependent, i.e., only goes when we tell him to. If that doesn't work, we'll put him on a timed potty schedule. Either way, it's goodbye diapers and hello big boy underwear. And hello mess.

It's a Beautiful Day in the Neighborhood

It's kind of hard to believe less than a week ago we were about to have a snowstorm. Well, all that snow's gone now, thank goodness, and it's an absolutely gorgeous day outside. All my kids are better, more or less, and I will be happy to send them all back to school come Monday. It was a little rough there for a little while, but it passed, as all things do. Ben has been a little charmer for the past few days. He's smiling, cuddling with me, and generally being a good boy. Still spitting, occasional gasping noises, but for the most part no screaming or crying. He is still getting completely wiped out at around 7:30 pm, and I'm not sure why. His schedule hasn't gotten any harder, but every night, right before bed he winds down and sometimes falls asleep right where he's sitting. I'm not complaining but it's unusual behavior for him.

Ben's Mom

I am now officially a celebrity. I was at Target, doing my usual Targetty shopping, and I noticed that a special ed bus was parked in front of the store, and I assumed that there were probably some kids somewhere in the store. Sometimes they go on field trips to gain real world environment experience. As I was approaching the front of the store with my cart, I went past the kids but didn't see anyone I recognized. Just then, one little boy with Down's Syndrome shouts out "Hey Look - there's Ben's Mom!" That just made me smile. I didn't know who he was but he sure knew who I was! His teacher asked him how he knew I was Ben's mom and he said it was because Ben rides his bus home. He must see me every day when I drop Ben off or pick him up from his bus. I thought that was very cool and I told him so.

Sickness and Wellness

Ben came home from school early yesterday with a fever. I put him on the couch, turned on the tv for him, gave him his favorite fuzzy CARZ blanket and he layed there almost the whole afternoon and even took a nap at one point. It would have been kind of nice, actually, if it hadn't been so pitiful. I'm not used to having a quiet, tv watching kind of Ben. His fever hovered around 100 and 101, but I never gave him Motrin, since I've been told that if it's a low grade fever, it's better to let it burn off by itself. I put him to bed promptly at 8pm and didn't plan on sending him in today. But when he woke up bouncy, happy and feverless, I changed my mind. Off to school he goes, and I hope he stays there. Caroline was sick since Saturday night and today is also her first day back. Finally!

Auditory Discrimination is Ben's Game!

All right, some good news to report. I have to take it where I can get it. Ben was bobcat of the day twice last week. That's the award his elementary school gives to the student of the day. Granted, his is a small class, but apparently he's been behaving really well on the days that he behaves well. Got that? On the other days, his "off" days - well, see the last post. Today he had an ABA session even though school is out, and he's found his new forte. For a while now, his teacher at school has been writing home that he's doing really well at auditory discrimination. I didn't really know what they were refering to, but apparently there's a whole ABA program designed to get a child to listen to a sound and then find the picture that corresponds with the sound. For instance, the sound of a duck quacking will be played, and then the child will pick the picture of a duck out of a set of different pictures. Well, Ben is very good at this! Today his therapist probed him on a whole lot of new pictures and sounds that he had never tried before and he got almost all of them. He apparently knows what sound a frog makes, and even how a toilet sounds when it's flushing. Cool, huh? It's nice to find something that Ben excels at. Every once in a while, I get a glimpse of how smart he is.

Ben Meets the Good Doctor

I drove Ben to Maryland today for his appointment with his new DAN! Developmental Pediatrician. It was a less than stellar visit on his part. To put it bluntly, Ben went after her glasses and scratched her face. I guess it shouldn't entirely surprise me, but it is embarassing to have your child do that to someone. She was good about it, but I felt horrible for the rest of the visit. Especially after I had said last week that he wasn't very aggressive. I guess the operative word is very. Still, I should know better than to blog after a day like today, but I thought everyone would want to know what happened. As for her thoughts on Ben, I won't find that out until next week, when I go back by myself. Today's one of those noisy weird days for him, and his verbal stimming (ie yelling, making gasping sounds) is high. I'm feeling less motivated than usual and a little sad that I can't take the girls to an event at their school because I can't take Ben with us on a day like today. I'm sure they'll get over it, but still, it makes me sad. His ABA therapist is sick today, so no therapy for him either. *sigh*

Got the Auth

Well, I recieved the authorization for the out of network doctor that Ben is going to see, but of course, it has the wrong insurance codes on it. It's always something, isn't it? So I have several phone calls lined up for tomorrow morning. I'm faced with a forecast for snow again on Monday and Tuesday, and I really hope that doesn't mess up my Wed morning appointment with his new doctor in Maryland. Her office person said I can do a phone consult if the kids have a delay, but Tricare doesn't pay for phone consults. At least I don't have to bring Ben to this first appointment. It's just going over his medical history, filling out paperwork, determining what tests might be needed, etc. I'm still bummed out by all the ice all over our driveway but the weather guy tells me it's supposed to warm up today, so maybe I'll be lucky and it'll melt. I joined the rec center across the street from us for the next month, since the weather has been unpredictable. At least I'll have no excuse for not getting some exercise. They have a couple of tread mills, some weights and an olympic sized indoor pool. If all goes well, I'm going to head over there tomorrow after the kids get on their buses. Oy!

Autism and God

I have a dear friend that I met in Washington last year who has a child with severe mental and physical disabilities. Her daughter can't sit without support, and the doctors are not even sure if her brain can see what she takes in with her eyes. Still, my friend is extremely close to God, and sees her daughter as God's precious gift to her and his way of humbling her to His greatness. I admire that philosophy, but, not being of the same religious philosophy, feel that I cannot fully comprehend it. So let me tell you about me and God. When I first started to get an inkling that Ben had something wrong with him, I was angry. And bitter. I remember distinctly sitting in the Explorer in the parking lot of Katherine's preschool waiting to take her in when it hit me full force. Here I was, the mother of three kids three and under (Kath was 3, the twins barely 2), and I was having to face the fact that my son wasn't right. I was exhausted from two years of baby care, constant feedings, diaper changes, supervision and the breaks were few and far between. And God had the audacity to make one of my precious children have something wrong with them. How dare he? Hadn't I worked hard enough? Wasn't I punished enough by having twins right on top of my eldest? I remember crying about it for the first time, and certainly not the last. Still, as I became surer of Ben's challanges, I began to "forgive" God, but I was on neutral terms with Him. If we didn't go to church for many months, well, God was the one who saddled us with all these problems, so He of all beings should understand how hard it was.
I've come to realize that in the grand scheme of things, Autism is only a drop in the bucket. Yes, I do go to church regularly with the kids even with Rob gone. Ben's gotten easier to take to church as long as he has his ipod. My attitude towards Ben during church is almost self righteous. I'll do my best to keep him quiet, but if he's not perfect, the people around me can just deal with it. God made him too. And God made him just the way he is. I don't worry about Ben's salvation or his eternal judgement. I think he's already home free. Still, I do often think about whether Ben was made my son so he could teach me to be a better person. But thinking that way starts to bring the bitterness back in me, especially when I see many, many other people around me who have perfectly normal little kids. Why am I so lucky? What did I do to deserve all this "luck"? So I find for me it's better not to involve God in "giving" me a kid with autism. It happened because it did, not because I think there's some grand scheme at work. Tragedies far worse than Ben's happen to people far better than me. So I guess it's best not to analyze it too much.

January is a cold, cold month. . .

I wanted to say that on the whole, Ben has been doing a little better. I've started him on this anti fungal/yeast killing program and taken him off of almost all of his other supplements except for the cod liver oil/primrose oil combo, and calcium. He'd been having a lot of VERY hyper days in a row, and I was pretty sure it was the yeast rearing its ugly head again. He's still hyper, but not deliriously so, like he was before. The crazy laughing has gone away and once again he is doing well. I hate to take him off the Nu Thera, as when he's on it he performs much better cognitively, but I may try to start putting it back into his supplement intake after I add Zinc and Vit C back in, to see if the crazy hyper thing starts again. Hopefully he can continue to take it as I think it definitely benefits him. I finally got the authorization from the insurance company for him to see a developmental pediatrician, but of course, they gave it to him for the wrong doctor. The autism specialist that I have the appointment with is a DAN doctor, and isn't in the "network". I may have to end up paying a good amount out of pocket if I lose my argument with the insurance people. But I really want Ben to see her. I need some guidance. Sometimes I just feel like I'm fumbling around the dark, trying things here and there, hoping this or that will work. I told you he's been doing well, and he has for the most part, but he had an awful tantrum this morning while waiting for the bus with the girls. It could have been the cold, but for the life of me I couldn't get him to put on gloves. He just ran around crying so I left the girls at the bus stop and walked back to the house with him yelling the whole time. When we got inside, it didn't stop until I finally took out the I pod and put it on him. I played his favorite song, Maroon 5's "Won't Go Home Without You", and it calmed him down after a couple of minutes. I should really write a fan letter to Maroon 5 and tell them how many times they have saved my sanity. Usually, they are great tantrum quellers. By the time his bus came 20 minutes later, Ben was a happy camper ready to go to school. I was so wound up though that I actually looked forward to running in the 30 degree cold just so that I could destress. I definitely felt better after I did. I'm trying to work up to a 5K using the podrunner interval podcast. Archie our dog loves it too. That's been my morning!!