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.