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.