I'm thankful for . . .

1. My family. Not everyone has a great family. I'm lucky I do.
2. My kids.
3. Ben's therapists and teachers. He is getting more here than he ever has and I don't take that for granted.
4. The Air Force. In a time of high unemployment, I don't have to worry about Rob losing his job.
5. Food. I never have to worry about having enough to eat.
6. Books. I never have to worry about being bored. New ones are always coming out.
7. The library. I don't have worry about running out of #6.
8. Yarn. I have a lot of it. I love it. It makes me happy.
9. That I have a wonderful husband who cooks me breakfast on Thanksgiving.
10. My house. It may be mouse-infested and drafty, but I'm not out in the cold.

I could go on a lot longer, but you get the idea.

Fox Video . . . again!

I finally have Ben's filter and air pump all set up and he's thoroughly enjoying his fish tank. His fish even have a new glittering treasure chest decoration enhancing the tank's underwater atmosphere. Have an interesting fish tank is one of the easiest things we can do for Ben. He enjoys it so much and visits it throughout the day. Sometimes these visits are accompanied by flapping and yelling, but sometimes, like this morning, he just pulls up a stool and sits there, watching them. I thought about getting him a more elaborate tropical fish tank set up but once I looked at the main goal - to keep the tank visually stimulating - I decided that simple gold fish were the way to go. 13 cent comets from Petco are amazingly hard to kill. And so, Ben is happy. For now.

Verbal Gains and Crazy Sleep Habits

Ben was awake when I went to sleep last night and awake when I woke up this morning. I have no evidence that he slept. I must assume he did, as he always does, but I can't know for sure. I've given him just a little bit of the Yeast-Aid, (less than 1/4 tsp) for the past few days, and boy, that stuff is potent! His doctor wants him to have 1/4 tsp twice a day, but that is something we're definitely going to have to work up to. He is making a great amount of progress in his language, and I'm dearly hoping it sticks. He's trying so hard to make sounds and words, it's sweet to see him being so earnest. His teachers and therapists have noticed it, and I think the Yeast-aid has helped increase his concentration, for all the of the other negative side effects it has. PROMPT speech therapy has been a big help too. I don't think we'd have seen this progress without it. His speech therapist really wants him to have OT privately as well, but I've had difficulty securing that. Tricare wants me to travel 30 miles each way every week in Washington DC traffic. I'm not going to do that, I'm afraid. So I'm looking into other ideas.

H1N1 Vaccine and Pregnancy

I'm disturbed. I'm concerned about the new rate of autism, which has seemingly almost doubled itself in a few short years from 1 in 150 to 1 in 91, and that said, I am extremely concerned about all those pregnant women out there who will be subjecting their babies to the H1N1 flu shot, thermerisol included!!!!! How will this affect the rate of autism in the next five years? Will it become 1 in 50? 1 in 30? I get so angry at the medical community sometimes. I'm not opposed to vaccines, unlike some members of the autism community, but I don't like the pushiness of most physicians. If I were pregnant, there would be no way to get me near a H1N1 shot unless they could guaratee it was manufactured without thermerisol. For those of you who don't know, thermerisol is a perservative containing mercury that was standard in vaccines previous to 2001, now it is only routinely used in flu vaccine. My children have never received a flu vaccine because of this. Many people believe thermerisol can be linked to the rise of autism because the symptoms of mercury poisioning and autism are similar, however, I don't believe it caused Ben's autism. I'm especially disturbed by a report I read about http://www.newsinferno.com/archives/13290
linking the Hepatitis B vaccine given to most newborns has been linked to developmental delays in baby monkeys. I'm sorry to say it, but I don't always trust the medical community anymore. Whatever the cause of Ben's autism, I wish I could go back in time and unvaccinate him. Even if his vaccinations didn't have thermerisol, I feel they did some unrevokeable damage to his brain. I strongly recommend anyone with a baby follow Dr. Sear's alternative vaccination schedule. A baby doesn't need a Hepatitis B shot at one day old. I've survived 36 years without ever having one.

1 in 91

As I'm sure most of you know by now, the new statistics for autism put the rate at 1 out of every 91 kids. Holy mackerel! There is a new study linking the Hep B vaccine to brain damage in newborn monkeys and newborn human males so now there is a call for President Obama to halt the automatic Hep B vaccines given to almost every newborn infant within the first couple of days of it's life. Too little too late.

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!!

January Update

I've been mulling over whether to keep this blog going or abandon it all together, and I really haven't decided either way. I'm not sure what is pulling me in the direction of abandonment. It's true that lately I've felt my time is better used on other pursuits, and frankly, I find regularly keeping up with something like a blog rather draining. When I first started this blog in 2005, my intention was to use it to keep track of Ben's progress using dietary and biomedical changes, and hopefully I would be able to consistantly post about progressions that he made. As I've become more intimately involved with the beast that is autism, I've realized that nothing about it is cut and dry. If you read back into 2005 and 2006, you'll find entries where Ben has made steps and progress that were superficial, and weren't repeated. In fact, that's been his entire story. Ben gains a skill. Ben loses and skill. Ben stops doing one stim. Ben starts up another stim. Something, like Threelac works for a while, progress is made. Then it stops working. In no sense am I ready to give up yet, but chronicling my hopes and disappointments has become taxing emotionally. It's not that Ben hasn't made any progress since last summer - don't get me wrong - he has, academically at least. This is a good place for him, probably as good as we're going to get, short of an enormous financial windfall. He's getting therapy four days a week and his therapists are wonderful. His teacher is wonderful too and he looks forward to getting on his school bus every day. Even though everything is "right", I'm afraid there are no miracles for Ben. New sounds, new behaviors, emerge every day. The spitting is constant. I understand when his extreme behaviors make others not want to be around him and therefore us. It's perfectly understandable. The average person isn't used to the backgroud noise that is a daily occurance in our house. People are freaked out by spit. I wish I could turn it all off, turn off the noise, the hysterical laughing for no apparent reason, the impish moods where he must do everything he knows he's not supposed to just to see if he can get you mad so he can laugh at the funny faces your making . . . . but I can't. I am still searching. Searching for ways to cope, searching for ways to better integrate Ben into our daily lives so that mundane tasks like waiting for the bus with the girls or going to church don't turn into neighborhood spectacles. I've accepted this is the way life is now, but I believe that one day it can and will be better. It's got to be. There's got to be an answer that we haven't found yet that will help. At least a little bit. So I may still periodically update this blog if anybody still reads it. Every now and then I might still have something to say.