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