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.