Life as it Is Right Now

I just couldn't bear to leave my last post alone for too long, so I feel I need to supplement in order to clear the air. I don't like to complain about Ben but I'm afraid I do it too often. He's a great little boy, so fantastically loving and cuddly and smiley. I think God made Ben exactly as he is for a reason. His behaviors are trying, truly, but I think he far exceeds what damage he causes by what he gives back to us, unconditional love. I was having a bad day. Potty training Ben has not been easy, and so far, he has had only one success. I know it needs to be done, but I'm not sure how to do it, other than make him sit on the potty periodically and hope for the best. He has a couple of big events coming up, one is next week he goes back to Fort Bragg for his dental surgery. Providing he doesn't get sick between now and then. Poor Ben. He is great about most things but doctor's offices are one place he absolutely will not tolerate. It'll be a trying day for all of us. The other event is of course Spring Break, first week in April when I will once again, in earnest be trying to potty train him. I don't know if it will work or not, but I hope hope hope we can get this knocked out of the way. The process is very draining. I found it so when I potty trained Katherine and Caroline and I disliked every minute of it. And they were quick learners. So there it is. That's what's going on.

Spitting and Self Involvement

He's spitting again. It's driving us crazy. Spitting on the couch. Spitting on the floor. Spitting on the carpet. Some days it seems like Ben is bent on destroying every single thing in our house. If it's intact, he wants to mar it in some way, to make his mark. He bite things, pulls loose threads, stains things on purpose. I don't want to be negative, but I guess I am today. Forgive me. Some days it's hard to live with Ben. As for the self involvement, I guess that's mine. I'll admit it. I'm far from the perfect mom. I'm self involved. I like doing my own thing. I work with Ben on most days, but often the demands of all the kids combined just saps my energy. This is why my blog notes are so few and far between. Ben's ABA is going well, but on a daily basis, I cannot seem to keep one step ahead of him. He outthinks me consistently. It is difficult to anticipate his next move. He gets things I never would have thought about. The spitting is just the most recent development. I'm sure my next post will be more upbeat. Sorry.

1 in 150

Well, I suppose most of you have heard by now but in case you haven't . . . the rate of autism has now climbed from 1 in 166 to 1 in 150. Roughly 1 percent of all boys are autistic! That's crazy! You'd think there's be some national panic going on. I found it funny when they were discussing all the implications of this on the Today show, they were scratching their heads as to why such places as New Jersey have much higher rates than places like Alabama? Pollution perhaps? Well, any parent of an autistic child knows exactly why New Jersey has a higher rate of kids with autism than Alabama does! It's the schools! New Jersey has a great education system, complete with ABA, and a lot of services other states don't offer. People who have kids with autism move there on purpose. And they move away from places like Alabama. No offense Alabama! Any how, that's my two cents on all of that. Ben's sick again. I kept him home from school today. Poor little guy. All in all, he's been a happy little guy but I sure can't wait until the cold season passes. So there it is. I'll write more soon, I promise, but right now I have to go fix dinner.

New News

Got the news that Rob's been given an assignment for the summer out in Washington State near Spokane. So, after three years here, it's time to move again. We didn't think we were going to have to, the Air Force is hurting for $$ and has stopped moving most officers. The keyword being MOST. Alas, our time has come. Now I have to research Spokane and what it does for autism. So far, nothing negative has come to light, the schools seem to be good, though the cost of living is higher, it's probably not all that much more than we pay now. Ben's dental surgery that he was supposed to have on Thursday was postponed until March 15th. He had the sniffles and they wouldn't operate. It's probably just as well, since it snowed Thursday morning and school was cancelled so we'd have had a heck of a time getting to Fayetteville and back anyway. Anyhow, it's 3 in the morning now and I guess I've got insomnia. Again. *sigh* Ben has been very hyper lately, but very affectionate. Nothing too new to report.

Growing Up In Fits and Starts

I went roller skating today for the first time in about 20 years! Katherine had a birthday party to attend, and of course, I tagged along. I was a little nervous about it since she's never done it before, but she did well, all things considering. "All things considering" means that since the poor kid is saddled with my un-athletic, un-coordinated, non-graceful genes, she handled herself well despite the fact. But enough about us. This is Ben's blog. I don't have any big news to report about my favorite little guy, other than his new passion for peanut butter has led him to acquire new skills. Now I have to keep it up on the shelf, because Ben will fish it out from my lazy susan, and somehow he managed to get the top off (his motor skills must be improving) and dig his hand in it before I found him smeared in peanut butter. As he grows, we are faced with the realization that the challenges of raising Ben will intesify on some levels. He's so big and tall now that he can reach an amazing amount of things that we don't want him to reach. In a perfect world, he really can't be left alone for a minute. Time and time again he's proven to us that if there is trouble to be found, he'll find it in the time it takes to make a telephone call. He's a pleasure seeking machine. Even if he perfectly understands that he's not to do something, if we're not around and he wants to do it, he will. He'll eat a crayon, bite the hands and feet off of his sister's dolls, GET INTO PEANUT BUTTER! Sometimes he even watches us to see how close we're paying attention. I never know what to expect with Ben. Life is sure interesting with him around. Until next time!

Snow Where We Live!

Back In the Saddle Yet Once Again . . . .

Okay, we gave in and put him back on the gluten free/casein free diet. And yes, it does make our life harder, but it also makes our lives easier. Instantly, he's started sleeping well again. Hasn't had really any tantrums the past few days, where, on the regular diet, they were a daily occurance. He's still stimmy, but he's always that way. Haven't really figured out what to do to make him want to stim less, other than finding things to occupy him, but obviously I can not do that constantly. We did have a nice little ABA work session today and I think I'm ready to get back on track with that. There are so many things I want to do with Ben, but the magnitude of what he needs versus what I have the time to give him is overwhelming. Started a new supplement called Behavior Balance. Just when I thought I'd run out of new supplements to try, I found one. I guess in one sense I've given up trying to "cure" him, but I can't help holding out hope that some new thing will at least help him a little. I suppose that's the plight of the parent of an autistic child, and unfortunately, it makes us easy target for unscrupulous professionals who prey on people's hopes. But enough of that. I wanted to answer a question submitted about my last post --- Mozart and the Whale in not really a family movie. There are some disturbing stories/scenes in it that I wouldn't want a kid to see or hear, though it might be okay for a teenager.

Mozart and the Whale

Saw a movie last night . . . it was called "Mozart and the Whale". Rob didn't like it much and bailed out half way through. I thought it was alright, but the thing that made us rent it in the first place was the two lead characters have Aspergers. It was actually kind of funny, and if you didn't know anything about autism, it might have been enlightening. Asperger's is obviously not as severe as autism, but in one scene, the male lead and his Asperger's friend were at a laundry mat not to do laundry, but to watch the dryers spin around. Then they comment "That was a great load." I could see Ben doing that as a grown up! The male lead was based on a man I saw last year at the Autism Society conference. He was the keynote speaker. He really didn't strike me as having Asperger's but perhaps he's assilmilated into society as he's gotten older. He was probably in his late fifties now.
As for Ben, the gluten is definitely affecting him, but we can't decide if it's a positive or a negative effect. He's been VERY energetic (a euphimism for hyperactivity), yelling more, stimming more, sleeping less, and crying at the drop of a hat. He has also been extremely cheerful and his teachers report more affection towards his classmates, and his being more socially cued in. He's paying better attention to his surroundings. So what gives? Right now, I'm kind of leaning towards putting him back on the diet, but I'm going to give it the month of January to sort itself out. Maybe it's an adjustment thing.

A Ride on Dumbo!

Everyone is Better Now, even me!

Well, all the kids are well and healthy now, but Rob and I were sick on our Disney World trip over Christmas. He is better now, and I'm almost better, but not perfect yet. It amazes me how long it takes me to get over sickness now. When I was younger I never had a cold for longer than a week, but now it just drags on and on. Oh well, back to the kids. Ben did AWESOME on our Disney World trip, much better than I could have ever expected. He was happy the whole time and tolerated almost every ride we put him on. His favorites were the merry Go round and the Dumbo ride. Disney World was much more fun for him than MGM or Epcot, but he was a happy cheerful little person during the whole trip. On to his next big change. We've abandoned the gluten/casein free diet. For now at least. He's very happy to be eating goldfish and drinking milk again, and for now, we're going to let him keep on doing it. I plan to pay close attention to how the month of January goes for him. He does seem a bit more stimmy and hyper, and there's been a couple of nights when he's had trouble getting to sleep, but some of that may be his body adjusting to it. On the whole he's been quite happy and affectionate, and he hasn't lost any of his signing ability. I must admit I haven't really done any ABA with him since before he got sick, so it'll be a while before we catch up to where we were.

At Home with 3 Sick kids . . .

I can't believe how long it's been since I wrote. But here I am writing while I have three sick little kids in the other room. Thank goodness, the tests for the flu came out negative and it just seems to be a nasty little virus they have. Ben has been very lethagic, and is watching TV passively, which is completely out of character for him. He hasn't been eating well, but is drinking at least. I'm keeping everyone out of school again today, and hopefully this weekend everything will clear up. This is getting old fast. On the bright side, I've gotten all my Christmas shopping done, so at least I don't have that much I need to do. Rob and I are very excited about going to Disney next week for Christmas, but the kids still don't know we're going anywhere. We're going to tell them we're going to visit Savannah overnight and see how long it takes them to figure out that we're not coming back. I'll take lots of pictures!

Mr. Smiley Social Boy

That's Ben's new name. I've seen improvement in the amount of interest Ben takes in the family lately. He's been smiling and teasing us and the girls, and in general has been a happy little guy, when he's been feeling well. We're learning our sign language signs in earnest now, working on them every day. I'm pretty sure he said bye-bye to one of the teachers at his school today, but I'm not holding my breath until I hear it again. He has a habit of saying things once and then never saying them again. We went to the park last Sunday and he had a grand old time just being a little boy, climbing on the jungle gym, sliding the slides and hanging out with his sisters. We're working on getting him to do 10 signs without any physical assistance: drink, chip, candy, cookie, jump, spin, swing, ball, duck and popsicle. Some of these are not entirely new to him, but he still needs assistance getting his hands in the right places. All in all, he's been doing really well, and we have an IEP meeting next week. Cross your fingers for us. By the way, I have a new blog, if you want to see what I'm reading after the kids go to bed. It's whatkristinisreading.blogspot.com. Go knock yourself out, but I'm warning you, don't expect me to read too fast. Speed reading has never been a talent of mine.

A Sunday Update . . .

Ben, Rob, Caroline and myself have some kind of cold that is a combination of everything (coughing, sneezing, runny nose, sore throat) and though it is annoying and hard to get rid of, it doesn't seem to be too intense, so we all feel kind of okay. Just with coughing. We went to church anyway, and Ben was a good as gold. We sat in the middle of the church instead of our usual back row seats, and he happily kept quiet and played with his koosh ball the whole time. He seems to be over all of his fears, though we haven't been to any amusement parks since Busch Gardens. He actually likes escalators now, and elevators no longer bother him. He went into a bathroom with Katherine and Caroline and myself and he was perfectly happy! Before this, he'd start crying anytime we went in one. So I guess he trusts us again. :-)

Look At My Cool Duds!

Glad We're Over That!

Ben was sick last week and that was no fun at all. He was also a little sick this weekend, so I kept him home from school on Monday. But lately he's been doing great, and woke up this morning with a smile on his face. He eagerly waits by the door for his driver to come and take him to school. School has had good reports, his eye contact has gotten better and he's calmer. I started a new supplement, Pro EFA by Nordic Naturals. There's been a research study done on autistic children and over the course of 3 months, this supplement helped all of them at least a little bit, some of them it helped a lot. It's really just fish and borage oil, the basic Omega 3's and omega 6's but the combo of them seems to be benefitting Ben. Still waiting for all the ABA stuff to fall into place, but it looks like it's all going to work out. Ben had an egg noodle the other day, and within an hour, Ben was bouncing off the walls right before bedtime. He seems to get over the infractions fairly quickly, but it sure does make difference when he has gluten. Milk products don't seem to affect him as much, but I keep him away from them for the most part. I may start experimenting with milk products combined with the enzymes and see if he tolerates it. I give him a calcium supplement daily because he doesn't have dairy. I've got a couple of other things I want to try, but I'm going to spread them out over the next few months.

Something to Think About

I read an article on Autism Web about Social Security benefits and autism. Autism alone might break the Social Security system, never the baby boomers. What's going to happen when one out of 166 eighteen year olds claims Social Security disability benefits for the rest of their lives? Autism qualifies one for disability but I don't think our gov't is going to be prepared for the wave of autistic individuals it's going to face in less than 15 years. We're going to, as a nation, be responsible for taking care of all these individuals for the rest of their lives. Do you think there's going to be enough group homes for them all? Probably not. Enough sheltered workshops? Autism is 5 times more common than Down's Syndrome. You'd think the gov't would be trying to figure out how to stop autism and for heaven's sake, giving the children who already have it the very best, most intensive therapy and interventional education it can so that they don't have to support the kid for the next 70+ years of their life!!!

Refrigerator Mothers

I don't know if most of you already know this or not, but a long time ago, in the 50's, 60's and 70's, if your child had autism, it was considered to be your own fault. Doctors actually thought this. Imagine being told your child has this rare (back then, it really was rare, only 1 out of 10,000) severe developmental disability and worse of all, you caused him to be that way. It was all your fault, because you didn't love him enough, and ignored his needs and was "cold" to him, causing him to turn away from human interaction. So many moms were frankly told that, and I can imagine that more than a few of them went into a depression. Perhaps even became suicidial. It gives me the shivers to think about it. Today, there are so many people thinking about autism, why it happens so often nowdays, how to cure it, if it can be cured, who's kid is higher functioning than who's, how to get the insurance company to pay to the treatment that is needed, that frankly, it exhausts me. Sometimes I get sick of thinking about it. Sometimes I think I don't think about it enough. It looks like I am going to be able to get Tricare to pay for some ABA therapy for Ben. Now. Two years into our assignment here, I finally get all the ducks in a row and find out that there's a qualified provider of ABA therapy and consultation in Cary, and Tricare is willing to shell out for Ben to use her. Sometimes I think I stumble onto critical information like this by pure accident. Rob found out about ECHO from a magazine article, not from any helpful tricare person. I found STOMP, this great resource of military families with children with disabilities by chance, not by design. It makes me wonder what I still don't know about and how much time is slipping away because of it. Of course, if we lived on base, I hope they would have given us more guidance than I've gotten on my own, here. Better late than never I suppose.

Zoom Zoom Zoom

Every once in a while, not too often mind you, but now and then, I get in a zoomin' groove. Everything has gone right today. My house is spanking clean (except for the master shower) and Ben has been ABA'ed for the day and the girls are happily playing in the playroom and everything is perfect. Rob is coming home tomorrow and I'm so proud that I have a clean neat semi organized home to show him. I've decluttered a bunch of my cabinets and though I have tons more to do, I took 3 boxes to the Thrift Shop yesterday. I am so psyched and happy right now, I must keep the momentum going. Now if I can only channel my energies into writing!! Ben was picked up by a transportation service guy this morning at 7:05 am and stayed at school until 1 when I picked him up. Cool beans! First Katherine, now Ben, and next Caroline.... it's off to school we go .... Hi Ho, hi ho .....

Autism Commercials

I was watching some show on CNN the other night and lo and behold, I saw something I've never seen before ... twice! Autism commercials! There was a little boy being strapped into his car seat by his mother and it said : Chances of your child being in a fatal accident: 1 in 25,000. Chances of your child being autistic: 1 in 166. Then it gave the site Autismspeaks.org. Then the other commercial had a little girl dancing and singing to twinkle twinkle little star and it said: Chances of your child starring in a Broadway production: 1 in 12,000. Chances of having autism 1 in 166. Wow! I felt validated! These commercials are for all those people out there who have no idea what autism is or how it's invading our children. I've actually met a few people who were like what- you mean he likes to do art? Autistic, not artistic. :-) Though some autistic ARE artistic, Ben isn't one of them - yet.

Buying New PJs

Before I go on about the new PJs, let me say that I met with Casey today and also I met with Elizabeth, Ben's new teacher at Headstart. Both meetings went very well, and I'm excited to have Ben start the year at his old school. Never thought I'd say that, but I was impressed by her and I hope he'll do well there. Right now there's only three in his class, but she said there's 3 more coming down the pipeline. Who knows when they'll get there. Anyhow she seems like a person who isn't afraid to speak up when things aren't right, so I hope it'll all work out. Casey seemed happy with the way things are going with Ben, and gave me some good advice I can surely use. I'll be meeting with her once a week now on a regular basis so I can keep up with all his ABA stuff. On to the Pajamas. I find it a little depressing to buy Ben pajamas and I had to do so yesterday. Why, you may ask, could buying pajamas depress me? Perhaps it's just over sensitivity on my part. When you go to the store, in this case Kohl's, to buy pjs for little boys it's almost impossible to find anything that isn't intensely decorated in cartoon characters, something most little boys of almost 5 years old would love. There's Spongebob, Scooby Doo, Superman, Nintendo, Dinosaurs, Toy Story, Carz, Thomas the Train, you get the gist. Ben could care less about any of it and that's the sad part. Maybe he will one day, but as for now, he couldn't even begin to sit through a movie like Carz, much less actually like it. I ended up buying Nintendo Mario PJs (on sale) for a kid that may never play nintendo. He doesn't even know what a nintendo is. I bought Thomas the train winter pjs for a kid who couldn't care less about the Thomas the train set he has, and only plays with it under great pressure from an adult making him do it. What ever happened to cute little fire truck and space pajamas? Gone with his babyhood I guess. *sigh*

Potty Training Aborted!!

I had to abandon potty training Ben yesterday because I simply decided for my own mental health, I cannot do it by myself. I need Rob here to clean and cook and care for the girls, or else putting Ben on the potty every 5 minutes is very stressful and I'm not a person that handles stress particularly well. He did show some sucesses on the second day and seemed to be getting the hang of it, but I couldn't continue it until I have some help. Doing it by myself is crazy and not fair to any of the children. Katherine got her first grade assignment today and has been put in a straight first grade classroom, not the Kindergarten/First Grade class like I had hoped. They had one, but they just didn't put her in it. Go figure. The girls managed to get one of their hamsters stuck - really stuck - in one of Ben's toys today and I spent a good 45 minutes trying to get it out. I finally did, but I was not a happy camper. Still, I managed to get a little bit of ABA work done with Ben. We worked for about an hour on task completion, gross motor imitiation and balance, verbal imitation (he's getting pretty good at saying "Mi" for Gummi - sometimes he even says "Numi") , touching requested objects, matching numbers in several formats, etc. I need to do ABA every single day with him. I guess I'll just have to put on a movie for the girls tomorrow and Sunday so I can do some work with him. He's been super stimmy lately but he worked well today despite that. I am so psyched that his preschool classroom right now has only 3 kids in it!! That is so awesome, but I know the school system is going to try to put more in. Hopefully he'll get some nice attention for a little while. Hope his teacher's good. I've been researching Air Force Bases lately since Rob's next assignment will be coming up shortly after Christmas. I want to be sure we have our best options for Ben and the family down on Rob's preference list. I'm very intrigued by Offut AFB, near Omaha, Nebraska because apparently, the schools are awesome. The base looks pretty cool too, nice and clean, with a lake on base on good officer housing. I've also heard great things about New Jersey's services, though the base in NJ, McGuire, doesn't look quite as nice. I think Virginia is out for us, though. Apparently, they don't have much in the Norfolk area for autism. California and Texas are still good possibilities, since we know we like them. So as you can see, I've been keeping busy. Two weeks until Rob comes back. Yay!

A New Groove

Hello. Thanks to Mom and MJ for making sure I was okay after the last post. Sometimes I get frustrated, but lately it's been going better. Hopefully I didn't just jinx today! I'm going to take Ben to the pool while K and C have swimming lessons and I'm not sure if he's going to have a fit or not. They have a running waterfall at the pool, and that freaked him out last time and we couldn't stay long. I'm looking forward to the pool party for Dad's birthday on Sunday, and so are the girls. I have no idea how Ben will react. I'm trying to be optimistic but he's been unpredictable lately. I, however, seem to be getting into a new groove. The first week was really hard with Rob gone, but I'm getting used to it, and feeling better all around. My mother's helper certainly was a good idea. It's so nice to have K and C occupied and not fighting. Ben has passed his matching picture to picture ABA program, and flew through matching color card to color card, so now he's perfecting matching numbers. Visual tasks are definitely his strength. We're still working on cutting, which he doesn't like to do, and holding the crayon in the correct grip. He's imitating about 4 different actions when I ask him to, and is very occasionally responding to my request that he say "ME" for "Gummi". I don't think he's really made the connection that saying a specific thing is a way to get things. But since he made the connection with picture exchange and signing, hopefully he'll make this connection as well. I'll keep trying. I've got nothing to lose. AUGUST 15th - after we get back - that's the day Ben is going to start potty training. I'm a little scared! What if he can't do it? Will I have the ability to follow through with it? I would love to be rid of diapers, but can I count on a kid who can't talk and likes to eat his picture cards to tell me when he has to go?

A Blow Up

I'm feeling kind of sad right now, because I just had a major blow up at Ben and I definitely got angrier than I should have. It's one of those bad autism days, not for him but for me. I thought writing about it would make me feel better. He chewed up my third dish drain stopper and now I have to go buy another one and I just bought one yesterday!! He pulls them out of the sink and chews the rubber part on the bottom until it won't hold the water anymore. Everytime I see him try to do it I stop him and tell him no, but he did it without me looking and I was so mad. And then I put him in the playroom and he tore one of his board books into a hundred tiny little pieces all over the playroom floor. He didn't do it to spite me, he just likes to destroy books. Its as if he looks for ways to be as destructive as possible. I spent the other afternoon mounting all of his pictures on mat board and wrapping them in packing tape in an effort to make them safe from Ben so can use picture exchange again, but it didn't really matter. He's still finding ways to destroy them. I don't know if he'll grow out of this, but I sure hope so. I know it's not his fault.

Ploodles, Fire dogs, Hamsterds, and the Crickets

Hello, it's been a while since my last post and Rob is leaving for SD tomorrow. The kids are okay, and looking forward to school starting but not nearly as much as I am. As for the funny title of my post today, these words all come from Katherine. A Ploodle is a curly dog that Katherine says won't make her and Daddy sneeze and maybe we can get one on our very last assignment before Daddy retires. A Fire dog is a Dalmation, from 102 Dalmations (the sequel) which we watched on movie night last Friday. The little Dalmations are fire puppies. A Hamsterd is what kind of pet Katherine has, two of them to be exact. And the Crickets are Mommy's favorite band, formerly known as the Beatles. Their pictures are all over our favorite booth at Fuddruckers and the girls like to ask me questions about them. Ah, children.
Ben is doing a little better, and seems to be coming out of some of his fears. Rob was able to cut his hair last weekend with the clippers, which is especially good since he'll be gone for five weeks and Ben really needed one. He didn't fuss like he did last time we tried. He's also over his fear of the bathtub, running water and kiddie pools. We haven't tried a big pool in a while. He was not happy about going on an elevator at the dentist's office the other day, but only whined and didn't have an all out tantrum. Yesterday at school they took him on a bus trip around the parking lot to prepare him for a field trip they're taking to the mall later this week, and his teacher said he only whined a little going up the bus stairs, and then was fine. So, maybe there is light at the end of the tunnel.

Ben's a Small Angel

Ben has adjusted to his Summer School classroom and seems to like it very much. Except for the whole bus fiasco, which he absolutely refuses to ride. His teacher told me that there is a teacher's aide in his classroom whom Ben likes tremendously. She is also a bus driver and comes to help out in the classroom after she finishes her morning driving. Anyway, this lady had an autistic son so she understands autism first hand. She lost her husband and autistic son in an house fire and was severely burned herself. Ben's teacher told me that Ben loves to sit on her lap and snuggle against her while they read stories, and it occured to me that God is using Ben! He's using my little boy to give someone else comfort and I think that's a great thing. I like to hold positive things like that in my heart because in some ways, Ben has again grown increasingly challenging. Since Busch Gardens, Ben has developed a fear of a whole heck of a lot of things. Elevators, escalators, haircuts, baths, running water, vacuums, pools, buses, wagons, tricycles, rides of any kind. Casey says we have to tackle one fear at a time, desensitizing him by exposing and rewarding him often. It's challanging because avoiding these things would be the easiet, but not the most prudent course of action. He must learn to function as these things are part of our society. It's a trying time, and we're going to the beach for the next week. I can only hope he hasn't developed a fear of the ocean, but time will tell.

We're Mean, Mean Parents

That's what Ben probably thought yesterday. We found out he does not like rides and he does not like amusement parks. We went to Busch Gardens in Williamsburg and the girls had a great time, but Ben did not. We made him go on a roller coaster which he did not like, and a scary haunted house ride, which he really did not like, but he wasn't wearing the 3d glasses so I thought I wouldn't be too scary without them, and besides, he's never been afraid of imaginary things. WRONG! We even made him go on a river ride with those big round rafts and he got soaked. Poor baby! He wouldn't even get on a carousel horse but sat on the bench with me the whole time. By the time we went out to eat at Cracker Barrel on our way home, he didn't want to even go into the restaurant, because he thought the darkened dining room was another ride. I feel guilty and I probably should. We're torn between accomadating him and letting the girls have a good time. I don't want to permanantly traumatize him, but we're going to Disneyworld in March, so some of our thinking is he needs to get over this a little bit. He used to like rides, so maybe this is a phase. I haven't been working on my ABA stuff like I should, but my mother's helper starts next week (I hope) so I'll be able to start everything (including potty training - I'm NOT looking forward to it) then. No word from FPG yet as to whether he got in.

Updating June Has Arrived . . .

and of course, with June's arrival, so comes the kids last day of school. For us it was last Friday, and tomorrow is our first full day of summer vacation. Ben starts ESY(Extended School Year) on the 28th, and he's going to take the bus to and from school. It lasts until August 2nd. I have to take Katherine to the dentist tomorrow because her permanant teeth are growing up behind her baby teeth and the baby ones don't seem to want to come out. That she might have to have them pulled breaks my heart, as she's already been through so much pain at the dentist in her short life. Ben has a dentist appointment on Thursday morning and I think he too will have to have a couple of fillings, though I don't know when that is going to happen. This afternoon Ben gave our new couch it's first real test when he grabbed one of our tea bags from the counter and proceeded to swing it around "decorating" our couch with the tea stains. Rob washed the slip covers and thought its not all out, it looks pretty good. More or less. *sigh* On a brighter note, Casey came by last week and gave me Ben's notebook. There's a lot of paperwork to do, with the whole ABA therapy thing but I'm optimistic about really getting started. I just have to do some reading first. It's hard to get around to it but I know it should be a priority. Also, a kind of a fun Ben development - he loves popsicles! He would never touch them before because of his aversion to cold things, but they gave him a little popsicle at preschool a few weeks ago and viola, he gobbled it up. So I bought a whole bunch of them for the kids and now all three of them are happy. We went swimming yesterday at a local pool, and they all had a blast. It was so cute, while I was getting lunch ready, Ben brought me his swim trunks insistently, as if to say, let's put these on me mom, and get a move on! He's so passionate about swimming, I'm pretty confident that one day he'll be a great swimmer.

Nothing too new to report

Ben's doing okay, but he had a bad day with his Speech Therapist yesterday. He bit her and was throwing things, which he hadn't done for a while. He might of had a gluten infraction, or it might have been a reaction to the probiotics I gave him the night before. He did seem very antsy and chewy, not sure what is going on. The baby birds in the other planter have hatched and the ones that I took a picture of all almost big enough to leave the nest. That nest sure is getting crowded, since they're all big now and there's at least 5 and maybe 6 of them. They have little feathers instead of fuzz now. I got some good responses to my mother's helper flyer, I've got four interested girls, so I just have to make a decision. Rob has the next week off and today he went on Katherine's field trip to the science museum. I'm going to take Caroline to McD's before we pick up Ben from school, as she is a little bummed that everyone has something to do but her.

The baby birds

Two sets of purple finches have made nests in our hanging planters outside on our front porch. One of the nest's eggs hatched on Mothers day (how fitting!) and the other nest hasn't hatched yet. I don't know if it will. But the baby birds in the one nest seem to be doing well. The picture I took a few days ago. They sleep alot, all snuggled together, just like puppies. The kids are doing well. Ben continues to be on a path to improvement. He's mastered the picture exchange and uses it all the time. We're working on sorting between big and little versions of identical objects, and he seems to have the idea. I'm also working on his understanding of the color yellow, so that he will identify it when asked in all situations. He hasn't mastered that yet, but we work on it practically every day. He matches numbers without any problem at all now. I went to an "ESY" - that's summer school - meeting last week and he was approved for it. That starts the end of June and runs into the 1st week of August. We'll probably be gone for a week in July, as Rob is leaving for South Dakota the last week of July and we want to head to the beach to spend some time together before then. Also, we have another screening for Ben at the school we want to get him into on Thursday. They have a few spaces open for the fall so I'm keeping my fingers crossed that maybe they'll pick him for their school this time.

The Baby Birds In Our Planter

I Saw This Video This Morning

and I'm giving the link, because it's really good. Here it is http://www.autismspeaks.org/sponsoredevents/autism_every_day.php
This video pretty much sums it up, but I don't have it quite as hard as these people. Their kids look a bit worse off than Ben is, but I guess he could get worse as he gets older, as far as aggression, tantrums, etc. So many of this autistic behaviors have come and gone mysteriously. He chews all the time right now, but this started again around November after a six or so month hiatus. He's not yelling much right now, thank goodness and hasn't been for a few months. The constant yelling is tough to take, so I hope that doesn't come back. His stimming is still quite bad, but not as bad as it used to be. Much of his recent progress has been very consistent, he doesn't seem to gain and loose skills as easily as he did when he was younger. Nothing too miraculous to report today, but he did use the sign for swing spontaneously instead of the photo when I asked him what he wanted. Hopefully, we'll continue to see progress. I haven't found a mother's helper for the summer yet, but I'm still looking.

Kristin

I Have So Much To Say

That I guess I've been intimitated about doing all the catch up I need to do on this blog . . . First, let me say I think Ben is doing GREAT!!! True, he did bite his teacher's aide last week (hey, there always has to be something wrong), but on the whole he's making strides like we haven't seen in a long time. First off, he has mastered the picture exchange. Down low, on one of my kitchen cabinets, I have several pictures of things that Ben can request, like jumping on the trampoline, swinging, going outside, playing with his singing dog, eating cookies, etc, and Ben is using them on his own without being prompted. And I know that it is deliberate because he'll go get the picture and then lead me to the thing the picture is of, like the trampoline, if he wants to jump. He's been doing this entirely on his own! Even sometimes if he tries to lead me to something without a picture, all I have to do is remind him to go get it, and he does without hesitation! You don't know how big this is for Ben, this is real, consistent, deliberate communication, and that is a major breakthrough. And if that weren't enough, he has also picked up several new sign language signs that he will mimic with only minimal prompting, usually just a gentle reminder. He can sign "swing", "cookie", "candy", "jump", "dog", - all this learned in just the last few weeks! He's really doing awesome, and Casey has been a big help so far even though we've just begun. I really think the NDF + and the Liver Life have been a big help too. I am optimistic that we'll be able to get some words out of him this summer. I am trying to find a mother's helper to play with the girls this summer, so that I can devote some real time to making more progress with him. He's been working really well, and I've started trying to do jigsaw puzzles with him and giving him more challenging tasks. I am feeling much better about things these days. More good news to report later, I hope.

Happy Easter Everyone!

Yes, I know Easter is over, but I thought I'd wish you Happy Easter belatedly. A throbbing tooth ache prevented me from enjoying Easter weekend, but I'm feeling much better. Ben went to TEACCH today, and still had an issue with trying to bite his teacher there, but she said it seemed to be more out of a need to have pressure in his mouth than aggression. If that makes it better. Ben's teacher at school is quitting at the end of the school year and it really comes as no surprise. I wish the school system would wake up and smell the coffee. I'm going to write a letter and send it to the superintendent, as well as everyone below him, but I have to get all my duck in row first. Apparently, there's someone in the Department of Public Instruction for NC that is on our side, and so I'm going to try to find out how to contact him to enlist his advice. So that said, Ben started Lincoln Center in November 2004, and has had 3 different teachers, and all of them have now quit. I don't fault them, I think they were all loving qualified individuals, but for heaven's sake, what is going on? Can't the school system see the demands they are placing on these people ain't flying? More later on this, but I have to go see what Ben is up to!!!!

I Almost Forgot I Had a Blog . . .

Sorry about that. A lot has been on my mind lately, and I haven't been calling people back like I should or updating this blog either. Sometimes I just feel like I'm barely treading water and if I stop for a microsecond I will sink. Ben has been doing okay lately in my opinion, but not everybody seems to think so. I got his progress report for the third quarter today, and he hasn't made much progress on really any of his IEP goals. His teacher and therapists make comments that his stimming and desire to chew on all chewable things has increased, and he has lost some of his ability to focus. They say he is not interested in learning new fine motor activities. At TEACCH today, the teachers said he was more aggressive such as pinching, scratching and throwing things in the hope of getting a reaction from the people he is with. He's even started the stereotypical autistic head banging recently, though thank goodness he doesn't bang his head very hard. So, it's so easy to be pessimistic and discouraged when talking about Ben. Beth at TEACCH told me that her friend, who is a teacher at the Princeton University Autistic School has done a lot of research into stimming and has said that basically, a child needs to be constantly redirected from stimming in order to break the hold it has over the child. For Ben, that would mean someone watching over him all his waking hours. He wants to stim constantly. It's the first thing he thinks about when he wakes up in the morning. I know they can't give him that kind of undivided attention at school, not with the teacher to student ratio being what it is. I am trying to keep him more occupied at home, but it's certainly not easy, especially with two other children thrown into the mix. On the brighter side, we are going to start consulting services with Casey next week and I think it will be worth it. I just want some support from someone who knows autism and can come into the house and tell me exactly what to do. I'm pretty good at following directions, not so good at treading water on my own. Here's to hope!!!

I am constantly learning from others . . .

This morning I took Caroline with me over to the house of a former classmate of Ben's. I'll call him Hakim for anonimity's sake. Hakim's family has moved from Saudi Arabia in order to get help for him, though his dad still works there. Hakim is a month younger than Ben and has a lot of the same issues Ben does. His mom started working with the ABA/Verbal Behavior Therapist from Hillsbourgh that we are hoping to work with about 6 months ago. I went there by invitation in order to talk with one of the workers working with Hakim about her experiences and to see what their set up was like. Hakims mother is enrolling him in another school instead of Lincoln Center, a school in Cary that is supposed to be terrific. I wish I could send Ben there, but unfortunately, Cary is not that close and the school is very $$$. Right now I'm reading Stanley Greenspan's new book, Engaging Autism in the hope that I can shed some light on what I'm supposed to be doing. I did get a ray of hope yesterday in that he cut through three lines for me without fussing. He also colored for me, but didn't look at the paper as he was coloring, and he even drew some horizontal lines for me. Nothing to exciting but it's progress, for him anyway.

Ben LOST it !!

Well, Ben had another "lose it" moment in church yesterday. I also had another "lose it" moment as a result of his lose it moment but that's another story. So anyway, we made it through the responsorial psalms before we had to make a hasty getaway. I tried everything. I took him into the nursery but he wouldn't stop crying. I used distractions but he wouldn't be distracted. We even tried the little chapel in the back of the church but then some people came in and started to pray, and well, I knew that Ben's crying wasn't condusive to prayer. So I left and went outside and sat on the bench while he pitched his fit. He was upset of all things, because of my purse. I changed purses back to using on that I've had for a while but hadn't used. Ben apparently had a memory of this purse having lollypops in it and kept trying to give it to me - his way of asking for one. Unfortunately, I didn't have any. I tried to show him that and I took everything out of it, and let him look for himself. This didn't do any good and once Ben has his mind set on something, there is no turning back. Ben and I spent the remainder of mass sitting in the minivan, waiting for Rob and the girls. This whole incident clouded my mood yesterday, but we did have a nice lunch afterwards. So at least something good happened. The autism conference was a success, and I was definitely inspired by some of the speakers they had. Thanks Kathy, for going with me!

Some progress is made

Well, well, well. I hate to be too much of the optimist, because I've been burned before so so many times. . . but Ben did a couple of cool things yesterday. I gave him one drop of NDF plus in the morning for the sake of full disclosure, but I really don't think that has anything to do with it, after all it's just a drop, right? At school in the morning they have a star with each child's name and picture on it on their classroom door. As part of their morning routine, the child picks their name out and puts it on the I"m here sign. Well, Ben is completely clueless about this, he usually just picks the nearest star, no matter who it is, and tries to put it where he's supposed to . Yesterday he actually picked out his correct picture and it wasn't even the nearest one! It's almost like it was intentional. Hmmm . . . maybe it was just luck but he also had a cool report from his TEACCH playgroup. His teacher there cut 5 square holes in a box and gave Ben 5 blocks numbered 1 through 5. She put the number 1 block in the first hole and then, Ben, unprompted, without any visual cues, proceeded to put the 2 through 5 blocks in order in the rest of the holes by himself. His teacher said that he even self corrected when he put the number 4 block in the fifth hole, he took it out and put it in his proper place. Every so often Ben surprises me and today was one of those times.

WooHoo! Have I Been a Lazy Blogger!

Didn't realize it had been so long since my last post. On my list of things to do today: Go look at a latex mattress that's on sale and Rob wants me to look at ... pick up Ben ... pick up Katherine ... make more muffins for Ben ... make some gluten free meatballs for Ben ... feed the kids snacks before the respite worker comes to take care of Ben while I cook, and play with the girls (yay! she'll be here for 3 hours). Do some more laundry (it NEVER ends!!!!) Balance the bank statement (Boo!). Straighten up (this also never ends). Make a list of all the things I need to do every morning so I won't keep forgetting them. I'm such an airhead these days. Call Ben's dentist to make an appointment to have him checked out. He's been crying lately when we brush his teeth and I want to make sure he doesn't have a cavity. Made one of my twice a week trips to the health food store to buy Ben more GF foods. Went to story time at the library with Caroline. Writing this is wearing me out . . . :-) Ben is on a new product called Liver Life and I'm going to start giving him the NDF Plus again tomorrow to hopefully start getting rid of some of the toxins that are inhibiting his brain function. I'll use up the whole bottle, and if I see no real improvement, I won't buy another one. It'll take me a while. He's been pretty happy the past couple of days. I even kept him with me at church on Sunday instead of taking him with me to the nursery and I was surprised at how well it worked out. I sat in the way back out of the main part of the church so I would disturb the least number of people possible. I brought a couple of koosh balls and a top that he proceeded to spin on top of the missals, but for the most part, he was quiet. I actually could concentrate on the mass. I'm starting to dislike taking him to the nursery because he's so disruptive and noone but me seems to understand him. But maybe this back of the church thing will work out. It's nice to be able to go as a family.

Trying to get some normality . . .

Well, to put it shortly, Ben is Gluten Free, Casein Free again, and we're just trying to keep him stable. His OT at school was concerned that we were unstabilizing his progress by messing around with his diet and now he was harder to work with and more uncooperative than he was before the holiday break. She wanted us to put him back the way he was, and so we have. He's been on a rampage lately, messing up the playroom by throwing things on the floor, and so I'm in a process of reorganizing it to make that more difficult. He threw the hamster cage on the floor one to many times and finally cracked it, so I had to move it out of the play room and now Katherine's hamsters are living on the kitchen counter. Ben is getting taller and stronger, and can reach up onto almost all of our kitchen counters without help. I can see how his autistic behaviors are going to intensify, if for no other reason than because he's growing up. On the bright side, Rob and I are thinking about chelation again, with the NDF Plus, and possible DMSA. We also have an appointment with a Autism Disorder consultant from Hillborough on Thursday, and we're hoping to put it all together and have her help us figure out what we should be doing to help Ben. I think she focuses on theraputic intervention, like Verbal Behaviour and ABA therapy, and will help us get started in these areas. I am looking forward to the upcoming autism conference here in Chapel Hill in a couple of weeks. Kathy will be here for that.

We've Made Some Major Changes . . .Again!

Here's a great web site with a lot of videos about autism that you guys can watch if you want to : http://www.autismspeaks.org/video/index.php I think they're by NBC news. Anyway, it looks very interesting. Ben has been off of the gluten free diet for about 4 days now. I haven't given him a lot of gluten or casein, but I've been giving him some every day. Yesterday and the day before he was in a hyperactive frenzy, but today he has seemed to calm down. His social attention seems to be better, which basically means that he's making good eye contact and paying more attention to people. His teachers at school said that though he was super hyper at centers and circle time, he worked better on his work tasks than he has in weeks. So I'm getting mixed reviews. We're going to gradually reintroduce a regular diet over the next couple of weeks, and assess whether it might benefit him to go back to it or not. Rob and I figure that we can always reintroduce the gluten free diet if we need to. Right now it's a wait and see game.

Pondering Our Next Assignment

I really like being a military wife. I think it's cool to be able to live in a bunch of different places, places that I'd probably never see otherwise. But now we have to start thinking about what place will be the best for us for the next assignment. There are no guarantees, of course, but hopefully Rob will be able to guide us to a good place. We've come to the realization that Ben is definitely going to need to be in special education for a good portion, if not all of his student career. I don't see any evidence of him improving enough to be able to go to a regular elementary school. It's frustrating, because everywhere I look I read all sorts of stories about children "coming off the spectrum" (becoming "normal") after being diagnosed autistic, but I know in my heart of hearts that that just doesn't seem to be in the cards for Ben. He's going to need a lot of help probably for the rest of his life. Everyone claims this thing or that thing helps autistic kids, but frankly I'm getting worn out. I just want Ben to live his life and enjoy who he is, learning as much as he can handle. I'm tired of thinking about what the cure is. I hope they figure out what the cause is so that autism can be stopped, but I think the "cure" seems to be different for everyone. I'm just not seeing the great results I've hoped to. Today I had to get Ben early from preschool because his teacher called and said he wouldn't stop crying. By the time, I got there, he was fine, of course. He has no fever or illness, but the kid can't tell anyone what's bothering him, so he has no choice but to cry. Of course, now that he's home, he's been happy as a clam. Go figure

Ben Had a Good Day

Well, sort of. He decided to have a late night party in his bedroom last night around 3:30 am, and I checked on him, but he was fine, just wide awake. He spent a couple of hours making noise, rattling his bed and pounding the wall, but when I checked on him at around 7:00, he was fast asleep, pajamas and diaper off. His new thing is escaping from his diapers, which is why I hesitate to do the pull up thing with him right now, because pull ups are even easier to get out of. But I know the day is coming that I have to bite the bullet and do it anyway. His teacher said he stimmed less today, and his TEACCH playgroup reported the same thing. But now, left to his own devices, guess what he's doing? STIMMING! I want to write another entry on a different topic, but right now I don't have the time. More to come. . . .

What is up with Austim?

I was told this morning by Ben's teacher, that there are 10 students - all boys! - on the waiting list for Ben's classroom. 10! You hear all this stuff about autism being at epidemic proportions, but geesh! This seems ridiculous. Right now those kids on the waiting list are only getting an hour a day of services from the School district. That's all the schools have to provide. It seems to me that the school district is trying to pretend it doesn't really have a problem and that the huge about of kids they have to service right now is a fluke that will go away, instead of facing the problem and creating another preschool autistic classroom which is NOT a part of Headstart. But it seems to me that the Chapel Hill SD is all about money, and Headstart gives them money, so why would they do something that has to come out of their own budget? They certainly don't seem to want to.

Taking a moment to breathe

Yes, I'm breathing now . . . Katherine and Ben are at school, and it's just me and Caroline in the house so I thought I'd take this moment to catch my blog up on Ben's life. Ben is back on the Gluten Free Casein Free diet and off of the SCD diet. He definitely seems happier, and I guess that must count for something. His BMs have been a little messed up since we went back the regular GFCF diet, but his teachers seem relieved that I've stopped messing with his diet for now. The kid chews on everything so it's hard to figure out what he's actually ingesting. Still doing the enzymes for now, and the cod liver oil, and the vitamins, and the zinc and probiotic at night. He's been eating some really good things since we did the SCD diet, I think he got desparate and so he now eats sliced up pears and clementines, two things he wouldn't touch before SCD. At school his progress report was mixed, they said his academic skills like sorting and matching were improving, but he still has almost no interest in cutting or coloring. I've made some things on the computer to work with him on that, but he's not showing much interest with me either. I can get him to point at pictures in books at home, but his therapists at school say that he won't do it for them. I've been thinking of other things I can do at home to help with his progress at school. Hopefully he'll put in some effort too!

Ben's Day

Today was a typical day for Ben. He went to school at 8:15, did his school stuff, had lunch and I picked him up at 1pm. He's been pretty happy and affectionate, but still stimming and yelling as usual. I worked with him for a little while this afternoon, doing a couple of puzzles at his work table and then doing some floor play. He actually built a tower with his blocks when I showed him how to do it and then asked him to do the same. He was only mildly interested in it but it's a start. We jumped on the trampoline, sang the ABCs (just me and Caroline) and then banged on the toy drum while we sang row row row your boat. I was testing his imitation skills by asking him to copy me as I tapped on the table. He didn't do everything I asked him to, but I can't deny that Ben understands me, he just doesn't know why he's doing these silly things.

Thoughts on a Sunday Morning

Ben didn't do so great at school or his therapies this week. He was antsy, uncooperative and very stimmy. I don't know whether this has anything to do with the diet or not, because theoretically, there's nothing in the diet that should disagree with him. I guess I'll hold out for a couple more weeks, as long as I've gotten this far. He's been chewing on his shirts lately, and ruined the collars of two shirts at school on Friday. I've heard that Zinc supplementation can reduce the desire to chew, so I'm going to try that as soon as the Zinc I ordered comes in the mail. At least he doesn't seem to be chewing wood anymore. I did find what I think was a crayon in his mouth last night. Definitely not on the diet. We're going to try going to church as a family this morning and Ben can go to the nursery. I always feel like I should stay in the nursery and watch Ben, because he's so noisy and drops things all over the floor. The other kids and parents don't quite know what to make of him. Sometimes they ask me why he yells all the time! Wish I knew. But I'll try to get away today so I can sit with Rob and the girls. I feel like I should be spending more time working with Ben, I know I really don't spend enough. I need to make it a higher priority. My excuses are not important. *sigh*

Still Doing SCD

Well, Ben's still on the diet. I've not noticed any real improvement yet, but his teacher said he was noticably calmer at school on Thursday and he did great at his therapies this week. At home his is pretty much the same, and if anything, his yelling has gotten a little worse. But he is making some interesting sounds and I think he has been saying nananananana when drawing my attention to the bananas on the refridgerator. Ben's Occupational therapist told me on Saturday that she would classify Ben as being moderate to severely autistic on the Autistic spectrum judging from his functionality. I've been thinking a lot about that lately and trying not to let it depress me too much. He's definitely not a mild case, she said, and I know she's right. Perhaps I have not been willing to face the severity of Ben's impairment. I will have to think about things some more and decide how I want to approach things from here, whether I want to continue pursuing biomedical treatments or should I devote myself to education and therapy. I need some more education on the ABA technique, and something called Verbal Behavior, which is a method used to teach language to autistic children. So many things to read about. I'm finding that I cannot do everything at once, though. I have to take one day at a time.

We've Taken the Plunge . . .

Well, we did. I finally put Ben on the Specific Carbohydrate Diet. Saturday was his first day and he's done okay so far, but this morning he slept until 10 am (VERY unusual for him) and he's been lethargic all day long. We went to the mall today and he just let me push him around. He hasn't yelled once and his stimming has been minimal. It's kind of worrisome, but I have it from some other parents who've tried the diet that this lethargy is actually normal, and it will go away in a few days. His diet is actually very healthy, when I get him to eat it. He seems to like the turkey meatballs I've been making him, and tonight I'm sneaking some grated zucchini in them. I'm really hoping this diet makes a difference, but I'm preparing myself for the eventuality that there's a good chance that it won't. Here's to hoping.

More News From the Front

Well, Ben bit his teacher on Thursday. They sent her to the doctor and everything and now her doctor wants to make sure Ben has no infectious diseases. I feel bad that he bit her, but sheesh! Anyway, Ben has been so oral lately, chewing on absolutely everything. I wish I knew what's going on. I'm gathering everything I need in order to put him on the Specific Carbohydrate Diet on Saturday. I'm crossing my fingers that this will help his negative behaviours.

Immunzations . . .

Luckily, I don't have worry about this right this moment, but I don't know what I'm going to do when Ben's vaccinations come due. Both Rob and I have agreed that we definitely don't want to put anymore vaccinations in him. I read an interesting article on the internet today about a place called Homefirst, a health care agency in metropolitan Chicago, that has treated 35,000 children over the years. A lot of the children (all races) who it treats are homeschooled and unvaccinated. The doctors there say that there isn't a single case of autism in an unvaccinated child. Not one. That's kind of interesting because the Amish of Pennsylvania have recently been in the news because of this. They don't vaccinate their children, and their children don't have autism. The doctors who treat them can verify this. The only two cases of autism in recent years among the Amish came from children who were adopted and vaccinated. Kind of weird, huh? But this leads to my problem. If I want Ben to go to school, I have to have some kind of exemption, and I don't know how to do that yet. If I claim religious beliefs (which some say is my only option) well, it wouldn't be the truth, and then how can I justify having Caroline vaccinated? I could homeschool Ben but I really don't think I'm the best teacher for him . . . I hope Headstart doesn't give me a problem about this next year, but at least he doesn't have to go to Kindergarten until age 5. He was so sweet today, he hugged me all the way down stairs when he woke up this morning. Such a love.

Post Christmas Reorganization

Hello everyone, we're doing okay today. Ben is spinning things in the other room and the girls are playing (mysteriously) upstairs. I've run out of enzymes for Ben and guess what? He's started chewing wood again, along with everything else, like plastic dinosaurs or Ken's hands and feet, much to the girls dismay. Enzymes aren't cheap, and I was trying to see if I could wean him off of them, but I guess I got my answer when the chewing started again. So I ordered more. I can't wait for school to start back, though it has been nice not having to drive someone to or from school all the time. Sometimes it seems I'm in the car all day long. Ben enjoyed his Christmas, and he did much better at Kathy's than I expected him to. He seemed content and didn't try to leave the house by pulling us to the door. He's doing even better at pointing and I've been practicing it with him every day. He's really enjoyed his sand and water table, but I put it out on the deck so it will be an outside thing. I'll have to get some birdseed to put in it because he throws the rice that I put in the water side all over the place. This morning he got a hold of a bottle of nail polish that one of the girls got in their stocking and got it all over the wood floor. Luckily, it does scrape up, but it's just tedious work to do. Sometimes its just one thing after another. But Happy New Year everyone, I hope it's a great one!

Look What Ben Did!

But I Don't Know How He Found the Food Dye . . .

Ben is purple. Really. I bought some neon colored food colorings the other day at Harris Teeter and Ben found it. The purple one anyway. I gave him a good bath and he looks a little better than he does in this picture, but he's still stained purple, and seems to be oblivious to it. I hope he's back to normal by Christmas, or there will be some pretty interesting pictures out of it. Rob and I tried to make light of it, because he actually did look quite funny, but in the back of my mind I know had it been something more dangerous than food coloring we could have been in real trouble. I don't know how he got to it. I had it up on the shelf. The only thing I can think is that I must of left that purple bottle somewhere where he found it. But he's getting so tall, he can reach a lot of things he couldn't reach before. He's helped himself to the Christmas cookies on the counter more than once!

Thankful for 2005

I find that, just like Oprah has always said, gratitiude is the way to happiness. I'm trying to instill this in the girls, but it's a hard concept for a child to comprehend. Appreciating what you have just doesn't seem to be as much fun as getting more stuff to them. But as I've gotten older, I realize just how important it is to take stock of what you have, and to be thankful that you have it. So here it goes, my list of thankfulness for 2005. First of all, I'm thankful for my family, both immediate and extended. My children are wonderful, and I couldn't ask for a better husband. He is awesome (as my mother in law recently pointed out!). Katherine is so smart and sweet, Caroline is also smart, passionate and friendly, and Ben, despite his disabilities, is a bright and loving little boy. I am so thankful we traveled to Europe this year, that I finally got to see London and Paris, and I think about them often. We couldn't have made the trip without the help of our family! I am also very thankful for the ARC, who provided us with Hannah and Julia, our respite care workers, towards the end of this year. It is so nice to have some needed help. All in all, I have a wonderful life. I resolve to try to be a more patient person this year, which isn't one of my strong points. I will try to be more mindful of details and to remember, children are delicate! I tend to rush around and not enjoy the process of being a mom and that simply has got to stop. Being a mom is my most important job and I intend to do it well and mindfully, as well as appreciatively. Here's to gratitude!

Encouraging progress. . .

Well, Ben made a little improvement last night while I was reading to him before Ben. I usually ask him to point to things in the book as I'm reading, mostly to get him to actually look at the book while I read instead of looking around the room. I used to have to do hand over hand with him and literally MAKE him point, as he would not do it on his own. Lately, he's been responding to what I ask him to point to by putting his whole hand on the picture, not always the right picture, but at least he's doing something when I ask him to point. Last night I put his finger in a pointing position and helped him point and then in between questions, I noticed he was holding his hand in an L shape with his forefinger and thumb stuck out. The next time I asked him to point to something, he used his forefinger! I think he was really trying to figure out pointing but just couldn't make his hands do it on their own. Motor planning is still a hurdle for him, but I'm pleased with his progress!

Seems Like Rob's Been Gone Forever . . .

it really does. But I've been getting along okay. Katherine is sleeping with me while Rob and Caroline are in NYC, and of course she's been getting more attention than Ben has. What's that saying about the sqeaky wheel getting the oil? We'll Ben's not much of a squeaky wheel. I did manage to take the two of them to the mall on Saturday. WOW! Parking was such a hassle. I hate the mall at Christmastime. Do I sound like Scrooge? However, part of the draw was that the Southpoint mall has a cool playground indoors by the food court and we spendt a nice little time playing there. It is a perfect playground for Ben, and despite all the commotion and loud noises and crowds, he loves it. It's rare to find a playground that Ben can play in without finding something to stim on. There are a few "stim" objects that he visits for a minute or two, but for the most part, on that particular playground, he plays just like a regular boy his age. He climbs, slides, goes through tunnels, jumps, all the regular kid things. I love going to that playground if for nothing else that for a brief few minutes, it's hard to tell Ben is different than any other little boy. Katherine misses Caroline a lot, she's not used to having to entertain herself with a playmate. We can't wait to have Rob and Caroline back for good!

Santa Claus Is Coming To Town

Here's a recent dilemma: What does Santa Claus bring Ben? The girls are easy, they are very typical for their age and very vocal about what floats their boat, so to speak. I'm really trying my best not to overdo it this Christmas, but still make it nice for them. Ben is not so easy. In the past, I've given him learning toys, like shape sorters and peg boards, so that he can use them with me assisting him. Last year I made the mistake having Santa bring a train set (Geotrax), a basic one I thought he'd at least have a little interest in. WRONG! He could have cared less about the thing. At least in the past I couldn't go wrong with board books, but now all he likes is spinning things. So, what does Santa bring? Tops? He's actually got enough of those. Grandma and Grandpy gave him one for his birthday that he really likes. Now Ben could actually care less about Christmas or Santa. He doesn't get any of the anticipation the girls have. But for the girls sake and for his, Santa has to come up with something nice for Ben too. So I was pretty proud of myself when I came up with the idea for a sand and water table for our deck. They're not easy to find this time of year because they're seasonal, but I scrounged a pretty nice one up at Toys R Us. Ben absolutely LOVES sensory play and I figure we can use it for most of the year. I'll put birdseed in it instead of water until the winter is over, and there's no chance of freezing. That way there's no clean up. Yay! In my attempt to try to get Ben to play like a normal boy, I bought him a little remote control Wiggles Car. I don't know if he'll get it or not, but it's worth a try. Ben is also getting a Gearation toy, which is a toy with spinning gears, I hope it will be right up his alley. And Lucky Ducks, a rotating duck game for 3 to 6 year olds. I don't know if he'll understand that yet, but he eventually will and the girls will have fun trying to play it with him. So that's what I've come up with. We'll see how it goes. I'm almost done with all my Christmas shopping! Yay!

Just Being Him I guess

Rob's gone to a conference in Florida this week and so far, I'm staying reasonably sane. The girls and I even made Christmas cookies this afternoon and then decorated them after dinner. In the bathtub tonight Katherine asked me why I always play with Ben in the bath but I don't play with her. This made me sad. It's just another example of the kinds of things that go through the girls' head regarding Ben and his disabilities. The best reason I could give her is that Ben does nothing with anybody else unless someone tries to get his attention. I told her that since she and Caroline play with each other, they don't need me as much. I know they do need me in a different way that Ben does, and very often I feel they're not getting the "me" that I want them to have. On a happier note, Ben's teacher said today that he's just about mastered all the teaching tasks that they have in his classroom and she's going to have to come up with something more complex for him. That's good news. He's very quick when he knows what to do. I guess that's all for now because I'm exhausted. 'Bye.

More News From the Front

Well, Ben said something recognizable last night, but considering he's done so many times before without anything really coming of it, I try not to get my hopes or expectations up. Some bananas were on the counter out of reach and he walked over to them, got my attention and then reached for them saying "Elp, elp, elp, elp" several times. I just knew he was saying "Help me get a banana Mom! " I was pretty cool hearing him talk and understanding what he wanted. I just hope he does it again, but I'm not counting on it. It's hard not to get discouraged. I can look at my journal entries from almost a year ago and he was saying more then than he does now. It's frustrating but part of the beast that is autism, I guess. I keep saying he's progressed in other ways and he has, but speech is not a strong point for him.

A Few Bad Days Can Change Our World

A few bad days is what Ben has had. He's been very volatile and quick to throw tantrums. The yelling increased, and he was difficult to take out yesterday. Surprisingly, this kind of behavior has now become uncharacteristic of Ben. However, it has lead us to conclude that yes, indeed, these changes ARE related to the fact that we've been feeding him "regular" food and not gluten free/casein free food. Hard to believe that diet can be such an influence but it obviously is. I'm sad for Ben, but maybe he'll become more tolerant of regular food as he gets older. I can only hope. All this thinking about food has led Rob and I to a conclusion that we've only toyed with before. We need to find out if altering Ben's diet even further will help him even more. The Specific Carborhydrate Diet (SCD) is basically free of all preservatives, and artifical colors or flavors. There really is no pre-prepared food that Ben will be able to eat on it. No conveince foods, just a lot of cooking for me. It's really strict. I'm planning on starting it the day after Christmas. I will do it earnestly for one month and if we see a lot of improvement we'll keep going. If not, it's just back to the GFCF diet. Right now I have a 4 year old boy with at least moderate autism with not functional words at all. I don't want him to be severely handicapped for the rest of his life. So I have to try all my options, and concerning diet, this SCD diet is my last one. And that's how I feel about it. 'Bye.

The Classic Halloween 2005 Picture

Update At Last!!!!

Hello Everybody, thanks for being patient with me. I finally got my laptop back from the repair shop and my O key is fixed at last. I plan to be updating my blog multiple times weekly, as I think it really helps me think through my feelings about Ben and my situation in general. As for Ben, the IEP meeting went okay, though not as well as I had hoped, but about as well as I expected. As usual, the administrative official was not very receptive to my pleas about getting more help in Ben's classroom. The Occupational Therapist and Speech therapist both seemed kind of pessimistic in regards to Ben's constant stimming and although they agreed that his cognitive skills have seemed to improve and he definitely works better than he ever has before, if left on his own, he will stim almost nonstop. We interviewed for a place at a different school called Frank Porter Graham, but Ben was one of seven students applying for a single spot in one of their classrooms and I am not even really confident it would be a good fit for him anyway, because of his desire to stim over doing anything else. Ben is off the gluten free, casein free diet, with the help of the enzymes, at least for the holidays. Then I will reasses any regressions that I've noticed or any digestive problems he has and decide what to do in the new year. He had macaroni and cheese for lunch for the first time in four months. He was in heaven. I think I got him to say "nana" today for banana, but boy, it's like pulling teeth to get him to say anything. He really has almost no words at all, although he's definitely improved in other ways. I will write more soon I promise!

The IEP is upcoming

On Wednesday, Rob and I have an IEP meeting for Ben and we're seriously thinking about replacing him. I think he needs to be in a different environment and so does Rob. The Lincoln Center isn't doing anything for him and he's in a class with 7 soon to be 8 special needs kids, mostly autistic, and because he's relatively happy and compliant, he isn't being pushed in the manner we would like. So I've been thinking about IEPs a lot lately, and IDEA law, and the "Best Practices for teaching Children with Autism". Stuff I never thought I would have to pay attention to, but now it's vital to Ben's progress. Sheesh!

Back In the Saddle Again

I gave Ben a regular waffle f0r breakfast yesterday, the EGG0 kind. He was fine f0r m0st 0f the day, w0rked great at speech therapy after sch00l, but yesterday evening he was yelling c0nstantly. S0 if n0thing else the GFCF diet affects his yelling, and that al0ne is en0ugh f0r me t0 keep d0ing it, because listening t0 c0nstant yelling affects 0ur sanity, a fact I didn't kn0w until the yelling st0pped. I'm pleased t0 rep0rt that Ben is n0w w0rking independently 0n a task by task basis. I can take all the pieces 0ut 0f a puzzle 0r s0rting task, and he can d0 the wh0le thing independently, until it's c0mpleted, and I d0n't have t0 pr0mpt him f0r each piece. That is a great achievement. He did five puzzles in church at the nursery 0n Sunday, and they were 0nes he hadn't seen bef0re. I give him a stim break in between tasks, like they d0 at his TEACCH s0cial gr0up, and this seems t0 w0rk w0nders. He watches a spinning t0p 0r plays with a squisshee ball f0r a minute and then I c0unt backwards fr0m 10, and he gives it up and w0rks the next task. He's als0 learned a new sign, the 0ne f0r CUP. I'm s0 happy t0 be rep0rting g00d news.

S0 Far s0 G00d

Well, we gave Ben regular pizza and n0thing much happened. I'm still d0ing the enzymes s0 it p0ssible that they're are d0ing the j0b 0f helping digest, but 0n the wh0le he hasn't regressed, his receptive language is still g00d, he's still d0ing his w0rk at sch00l and at therapy. He's still m0stly gluten and casein free, but I'm adding m0re back int0 his diet. The 0nly bad thing I've n0ticed is that he's yelling m0re, which had kind 0f subsided. I'm n0t sure if I'm just being super sensitive t0 it 0r n0t. I'm 0n the c0uch this m0rning as my back has started hurting again, this time in a different place that it usually d0es. I guess I'm falling apart. Get 0ut the 0ld heating pad, I guess. The pe0ple in charge 0f Headstart are acting kind 0f strage. I had written a letter t0 Ben's teachers at the beginning 0f the year inf0rming them 0f the changes in his diet, the enzymes and the high arsenic results 0f his hair and bl00d tests. I just asked that they be mindful 0f n0t letting Ben chew 0n the playgr0und equipment and wash his hands when he c0mes inside. N0 big deal, right? Wr0ng. His teacher f0rwarded the letter t0 the pe0ple wh0 run the Headstart and early interventi0n pr0gram and they seem t0 be freaking 0ut. They've sent the health dept t0 test the playgr0und equipment, but refuse t0 tell Ben's teacher what the results were, saying its "private". Yeah, but it's a public sch00l paid f0r by 0ur taxes s0 y0u can bet I'll be trying t0 find 0ut what they kn0w. N0w they want me t0 fill 0ut a f0rm s0 they can talk t0 Dr. Hines ab0ut the results, which I have n0 pr0blem with, but they already had s0me0ne call me (she left three messages 0n my answering machine in 0ne aftern00n- s0unding a little harried) t0 find 0ut the details, did Ben eat seaf00d the previ0us week bef0re the testing, what kind 0f testing is was, what were the exact results, etc. Anyway, they are making a way bigger deal 0ut 0f it than I am. Just put in s0me new playgr0und equipment and be d0ne with it, I say! Well, I'll sign 0ut n0w. Bye!

I Guess I'm a Lazy Bl0gger!!!

It's been a while since my last p0st. S0rry ab0ut that. But t0day, I am g0ing t0 give Ben a test. We are g0ing t0 take the kids t0 Chuck E Cheese's t0day after church and I'm g0ing t0 let him have pizza, the regular kind, with the enzymes 0f c0urse, and we'll see what happens. I'll give it a few days and keep him 0n the GFCF diet 0therwise. If the enzymes d0 what they are supp0sed t0 d0, we sh0uldn't see any difference. My plan is, if this w0rks 0ut t0 p0ssibly try intr0ducing hard natural cheeses, like cheddar and parmesan, int0 his diet, because they are all0wed 0n the SCD diet, and then maybe add s0me g0at's milk y0gurt. Eventually I will pr0bably try the SCD diet full fledged, unless we start seeing s0me very c0nsistent impr0vement 0therwise. But f0r n0w, it w0uld be nice if I c0uld br0aden his diet with0ut hurting the impr0vement he's made. His receptive language is s0 g00d n0w, meaning he f0ll0ws 0ne step directi0ns alm0st with0ut hesistati0n. He's w0rking really well at the therapist's and even yelled "Ahhh D0ne" when he didn't want t0 c0mplete a task with his speech therapist. His teachers at sch00l have n0thing but p0sitive things t0 say ab0ut him, but his Sp Ther. there says he's very c00perative but still n0t engaged in what he's d0ing. He still stims all the time, but can be redirected fairly easily. He's st0pped chewing 0n all the w00d in the h0use (thank g00dness) and is dr0pping things a little less 0ften. He's als0 st0pped jumping up and d0wn all the time, and n0w 0nly d0es it 0n his tramp0line, which he uses quite a bit. I'm trying t0 give him a l0t 0f meat t0 eat every day s0 that his ir0n levels will impr0ve with0ut the use 0f a supplement. He had a bad night last night th0ugh, and was up at 3:45 f0r wh0 kn0ws h0w l0ng, and s0 c0nsequently, is still sleeping as I write.

Talked With Dr. Hines Again

Dr. Hines did a phone consult with me on Sunday morning. We went over all of Ben's tests and she explained some things to me I didn't know and gave me some new recommendations. Even though, Ben's tests didn't show a significant level of mercury, she remains convinced that it is a major problem with him. He's very low on zinc and iron (iron deficiency alone is a cause of mental retardation) and the depletion of basic minerals isn't even allowing the mercury to come out in his urine, thus the low test scores. So we're still going to do the NDF Plus for now. As for all his food sensitivities . . . she says because he tested positive for 21 items, and that's pretty high, she says that definitely indicates a leaky gut (thought to be a cause of autism for those of you who are saying HUH?) and she is recommending another diet called the Specific Carborhydrate Diet, or SCD, which basically cuts out all grains and most starches, leaving basically protein, fruits, nuts and vegetables and some dairy. It's kind of like the Atkins diet. I've been researching it, and it seems to have a terrific track record helping all kinds of intestinal disorders, including kids with autism. But it will not be easy to do, so I'm still mulling it over. I thinks Ben has been doing well on the enzymes and a 99% gluten free, casein free diet, but sure, I'd love to shoot for the miraculous. I'm adding a probiotic to his regimen, on her recommendation. A probiotic is a dose of good bacterial cultures to help with intestinal healing. In theory, we should all take probiotics. I'm thinking about adding another enzyme to his diet, this one called No Fenol, supposedly it aids gut healing without the need to go on the SCD. I would love to find an easy way out of having to put him on the diet. I guess the good things about it all it, its short term. We should be seeing improvement in a month, if there is none, then he goes off the SCD diet. But I think I'll try the No Fenol first. On a positive note, some of you may remember I did the ATEC assesment two months ago and Ben scored a 102 on his autistic symptoms, which puts him up there in the severly affected category. Rob and I took the ATEC together ( to keep me honest ) two nights ago and Ben only scored a 62! So we've definitely seen some quantifiable improvement. Last night at dinner, he took a big bite of it (chicken with pineapple BBQ sauce and white rice, if you care) and said "Num num num num" and signed "more" before feeding himself another big bite. I think he was complimenting the meal! Tonight, I asked him if he wanted a cookie and he immediately signed "more" for it when I waited for his answer. I think he's getting the basics of communication down. Hopefully, I'll have more good news soon.

Th0ught 0n Katrina

Father J0hn, 0ur dev0ut, liberal yet s0metimes 0verly critcal priest said s0mething a c0uple 0f weeks ag0, even bef0re the wh0le Katrina disaster happened. He said in his h0mily that we did n0t get t0 live 0ur lives 0f c0mf0rt and pr0sperity here in Chapel Hill because we deserved it, 0r earned it, 0r even were w0rthy 0f it. We live here as we d0, as citizens 0f the middle class because we g0t lucky. We "w0n the l0ttery 0f life" as he put it, and we w0n it big. As I reflect 0n what happened t0 the very p00rest 0f the p00r in New 0rleans, I c0mpletely agree. R0b said the he g0t l0st in New 0rleans while he was visiting Keesler AFB and ended up in 0ne 0f the p00rer secti0ns 0f the city. He said the p0verty there was ast0nishing. S0me h0mes didn't even have d00rs. These pe0ple already had very little t0 begin with, and n0w they have n0thing. It makes anything I feel like c0mplaining ab0ut seem very miniscule. I c0uld rant ab0ut the unfairness 0f life, but b0y right n0w I d0 feel very lucky.

Playing Catch Up

I know it's been two weeks since I've last written in my blog. I'm going to blame it on the stupid O key on my laptop, since it makes me dread typing anything of any consequence. I'll use 0 instead. T0day is perhaps the m0st beautiful day all year. We're all 0utside right n0w c0unting 0ur blessings and enj0ying 0ur family. Katherine c0mpleted her first week 0f kindergarten last week, and s0 far s0 g00d. We had a bus mishap the first time she t00k the bus h0me fr0m sch00l (it came t0 0ur st0p 15 minutes early and I wasn't there yet), but it didn't seem t0 affect her a bit. Everything has g0ne sm00thly ever since. Ben started sch00l last Wednesday and s0 far, he's d0ing well. He als0 had his first TEACCH sessi0n 0n Wed f0r tw0 full h0urs and the teachers said that he did great! That was after being in sch00l f0r a full m0rning. I j0ked that he didn't have time t0 stim at all that day! Maybe the enzymes are helping. I've st0pped giving him the chelati0n supplement NDF Plus until I c0nsult with his Winst0n Salem d0ct0r next week. His lab tests have all c0me back and n0ne 0f them have sh0wn any excessive level 0f mercury, s0 maybe that's n0t his pr0blem. Just g00d 0ld genes I guess. Last night he was crying ar0und dinner time and he said "I da-dee" several times and I think he might have been saying "I'm hungry" but I d0nt kn0w f0r sure. If he was, he used the pr0n0un I c0rrectly, and that w0uld be awes0me. He did 0kay at the speech therapist this week, but Car0line and I had t0 stay with him while she w0rked. Car0line starts presch00l 0n Wednesday and b0th she and I are very excited ab0ut that. I can't believe all my kids are finally in s0me kind 0f sch00l. It's g00d f0r me and g00d f0r them. I pr0mise t0 write m0re s00n.
Kristin

School Starts Next Week

And frankly, it's not a moment too soon. I am looking forward to getting back into the swing of things. Ben has had a really good day today, except for a huge tantrum during the second half of mass when I ran out of lollypops and the nursery was closed so we actually had Ben in the church with us. There is no cry room. But Rob took him out, and the girls and I sat in for the rest of mass. Poor Rob, he said Ben was as upset as he's ever seen him. But aside from that, I had most of the afternoon alone with him, and he seems to be connecting better, making good eye contact, and laughing with me when we sang songs and played play dough together. I got some new enzymes in the mail yesterday, and I'm going to get really serious about them now. I hope that I can eventually take him off his Gluten free diet with the help of the enzymes, if I start to see improvement. I'm also starting a new brand of vitamins, just in time for the start of school. Rob and I seem to go back and forth with regard to optimism about the prospect of Ben's improvement. Some days, I feel yes, he'll eventually learn all the things he's supposed to and will be able to take care of himself as an adult, and other days, I'm just not so sure. I think he'll probably have to be in a special education classroom for at least the first few years of elementary school. I always wonder if he could be making more improvements if I'd just push myself a little more to create learning experiences for him. That's just one of the things thats always on my mind. Sometimes being a mom is hard.

A Good Day, all around

Rob's been off this entire week. It's great having company and the kids love having him around too. Today we found this awesome park in Burlington, complete with a carousel, a train and several amusement rides geared towards the under six set. It's run by the city of Burlington so the rides were really reasonable. Ben loved the carousel especially, and tried to pull me to go on it a second time. We let the girls try the other kiddie rides without him, as I don't trust him to stay seated and safe without an adult beside him. A family intake coordinator from the ARC came over today after we got back and we received good news about getting respite care for Ben. We qualify! Yay! We get 25 hours a month of care from them, at a extremely reasonable rate. I'm definitely taking them up on their offer. I would love to have someone just play with him while I do things around the house or with the girls. I always feel guilty because I don't play with him very much, and when he's not actively being played with, he has no focus at all. He will wander around the house looking for things to spin or chew, or to drop on the floor. I need to play with him more. I guess I just get tired of my overatures being rejected, but I can't give up and I need to motivate myself for his sake. Tomorrow, if all goes well, it will be off to the zoo for us.

Allow Me To Wax Philosophical For A Moment

Well, maybe not philosophical, maybe I mean sentimental. Ben was diagnosed a year ago this week. I first heard the words "I think your son has Autism Spectrum Disorder" from a psychologist here in Chapel Hill. That diagnosis was seconded by a team of therapists and psychologists employed by the state of North Carolina through the Child Development Services Agency. Since that time, Ben has had a year of Speech and Occupational Therapy (but he still doesn't talk!) a couple months of Play Therapy, 7 months of a self-contained special education preschool environment, blood tests, vitamins poured down his throat, creams, and now he gets B12 shots every three days and is on a gluten and casein free diet. My son is still autistic and probably always will be. I think he's a moderate case of autism, I hope one day he will be high functioning. I don't know if he'll ever be able to drive a car. I don't know if he'll always be in special education, or whether he'll be able to be in a regular class one day. I don't know if he'll be able to have a job. I don't know if he will ever be able to take care of himself. I don't know if he'll be able to get married or have a family. I used to cry a lot when I first found out Ben had autism. I couldn't tell anyone about it without crying. I was embarassed because I thought I should be able to talk about it without being emotional and when you cry in front of people, it makes them feel bad. I don't want people to feel sorry for him or us. Life doesn't play favorites. Nobody's life is perfect, and there are no guarantees. Ben is one of the happiest individuals I know and he's extremely loving. He gives hugs like nobody's business. He smiles his little dimpled smile at me all the time. He can't talk, he can't imitate, and there are a lot of things he doesn't understand, but love isn't one of them.

The Enzymes Have Started . . .

Well, Ben is improving, Rob and I both think so. But who knows why. He's been much quieter, though of course he stills yells sometimes. I've become a recent convert to the enzyme camp, and have started giving them to him at all meals and snacks. Dr. Hines told me to give him the enzymes, but I haven't really done it regularly until now, when recent information I've read has convinced me of their importance. I think its especially important since I don't know if I'll easily be able to remove rice and soy from Ben's diet, and the blood tests clearly show a sensitivity to them. Today I made him some gluten free playdough, and when I asked him if he wanted to play with it, he came right down off the windowsill and went over to his table to play. He does seem to be listening better and his teachers say that he's had nothing but good days this week, and is transitioning well between activities. His favorite new activity is spinning things, absolutely everything. I'd also mention just for the record that he's letting me read at least three bedtime stories to him at night without trying to get another book instead of the one I'm reading (his usual trick), and without trying to escape. Hopefully I'll be reporting more improvements soon.

Raindrops Keep Falling on My Head!

Ben has this dog that Mom and Dad got him for Christmas (yes, thank you mom) that sings "Raindrops Keep Falling ON my Head" when you press it's paw. Well, Ben recently rediscovered it and now plays the dog at least 100 times a day. I don't know if its the song he likes or the fact that the dog moves around and sings it. Either way its starting to drive me crazy. But I guess its harmless enough. He had another good day at school today and I finally got his last test sent off the the lab so now I'm officially done with all that. I'm concerned about the arsenic and aluminum they found in his hair test in high amounts. Ben's teacher pointed out to me that the playground equipment at his school is made of wood- it's old so most likely it was arsenic treated wood. So now I have to figure out if this arsenic wood thing is a fight I want to pick with the school system or not. He does chew a lot of wood here at home, so I'm sure some of it could be that too. And I don't know how much arsenic he has to have before it becomes dangerous, though I'm sure any amount doesn't help things. I'll be making another appointment in August with Dr. Hines in Winston, so I intend to consult her on these matters, though personally, I think she'll come out on the extreme end of things. She told me not to give Ben any more vaccinations indefinitely, which I'm still researching and mulling over. On the bright side, Ben seems to be doing well, even if no major changes have happened. He's happy and so are the rest of us. Katherine and Caroline have been playing together like angels for the past couple of days.

Help! Ben is Allegic to Everything!!!!

Okay, not really everything, but a lot of things. He had some blood taken a couple of weeks ago and the results of the allergy test came back today. He definitely is allergic to Cow's milk, and Gluten, as well as soy, sesame, rice, corn, egg whites, watermelon, tomatos, wheat, oats, barley, almonds and peanuts. Great. Now what do I feed him? I was doing okay on the gluten casein free diet, now that he's allergic to soy, corn and rice, I have to figure out ways to get those out of his diet too. He drinks soy milk, eats corn and rice pasta, and rice bread. But on the bright side, he's not allergic to potatoes or meat, so I guess that will be his main dinner from now on. We took him to a chinese restaurant with the girls today for lunch and he was as good as gold. Very quiet, ate his bannana and rice and potato chips very well, and didn't cry when I went up to the buffet like he usually does. Rob and I both noticed his terrific behavior. More progress to come I hope . I'll try to update this blog more regularly.

It's Monday again!!!

And I love Mondays. Really. I do. Ben went back to school today and about 10am I got a call from his speech therapist over the summer. Ben bit her. My son is a biter. I actually knew he was a biter, or at least could be, but he's not bitten me in a good long time so I kind of thought he knew better by now. Apparently not. I apologized profusely for his vampiric tendencies- he actually drew blood through her pants - but the school system seemed more worried about whether I wanted the therapist to be tested for any diseases so that I would know whether Ben had been exposed to anything, though it was unlikely he touched any blood through her pants. And here I was, preparing to write this blog about how he did a tupperware shape sorter, and beaded a bead snake yesterday without fussing, wearing his new vest. I really don't know if this diet and the supplements are helping a whole lot, but we'll keep trying for now. I took a test the other day called the ATEC, put out by the Autism Research Institute. Ben's score was 102, meaning yep, he's autistic. A normal child would have a very low score. I'm going to take the same test a couple of months from now and see how much has changed due to these interventions we're taking, at least that way I have some way to measure progress other than my subjective observations. Ben has turned on Taiwanese TV in the background now. I guess I'd better go. I'll write again soon, and I'm about 3/4 of the way through the new Harry Potter book, if anybody cares. :-)

Still Going, like the Energizer Bunny . . .

We took Ben and the girls 0ut t0 lunch t0day at Jas0ns Deli. It w0uld have been a great event except Ben g0t jeal0us 0f 0ur f00d and R0b had t0 take him 0ut 0f the st0re. It was kind 0f sad t0 see him deparately reaching f0r a cr0issant, when all he had t0 eat was s0me tapi0ca bread with jam 0n it, applesauce, and a cereal bar that he just didn't care f0r. The gluten thing hasn't been s0 hard, except f0r ,m0ments like this, when he feels deprived. He d0esn't kn0w why we're d0ing this. He seems t0 be a little quieter, th0ugh he still spends a l0t 0f time flapping at his r0b0t and chewing 0n w00d ar0und the h0use. I w0rked with him three times 0n Wednesday, and there is n0 questi0n that that's a l0t m0re than he usually lets me d0. Still, there's been n0 speech pr0gress, but we've 0nly been 0n the diet a week. Patience is n0t 0ne 0f my virtues, sad t0 say. I want results!!! I guess I d0n't have ch0ice but t0 wait and see if it all helps in the l0ng run.

Gluten Free At Last

Ben has been gluten free since, Sunday, or at least, as far as I know he has. There's gluten everywhere and he's very good at finding days old pieces of food in hidden places. But boy, I've done my best to make the kid gluten and casein free. No miracles have happened yet. He did do two puzzles and a shape sorter for me this afternoon, because I used the greatest of all his motivators. . . food! He's developed a fondness for potato chips (yes, they have no gluten) and these little natural corn puffs I found at the health food store. At least he has a couple of other snacks to eat besides fruit. We started giving him a shot of B-12 every third day and the glutathione cream twice a day. I'm finding it kind of difficult to remember to do everything every day. Supposedly, it takes 2-4 weeks before we'll see any kind of result with the B-12. I'm going to continue the gluten/casein free diet for at least a couple of months, it's really not as hard as I thought it would be, as long as you live near a health food store, and we've got two here in Chapel Hill. I also ordered him a weighted vest from Ebay, in the hopes that it will calm him down and make him more able to work with me and his speech therapist. Right now, he fights it so hard. He's got a real stubborn streak. I can't imagine where he gets it from! ;-) He seems to like summer school, and has adjusted pretty well. He's still VERY hyperactive. We played in the sprinkler and the pool today and that helped pass the day away. I can't wait until school really starts. Six more weeks!

London Telephone Booth

Here's what's happened

Yes, Rob and I were in London four days ago riding the Subway around town. We stopped at some of the very same stations that were bombed. This is so surreal. . . I feel so bad for all the Londoners and so lucky that we came back when we did. It's been quite a week. Ben swallowed a bronze lamp switch (at least that's what we think it was) and right now we're waiting for it to come out. I'm lucky he didn't choke on it. I have to take him and Caroline to the doctor today,him for a blood draw for all those pesky lab tests, and Caroline because Katherine stuck a stick up her nose while they were watching (innocently, I thought) Sesame Street, and now they both say something is stuck up her nose but I can't see anything. The doctor's going to check it out anyway. I was pretty mad. As I said, this has been quite a week.