A Trip to Seattle and back

Went to the city of Seattle and back this past weekend for a much needed break for out whole family. We stopped overnight in the town of Leavenworth on our way, a neat little German inspired town that reminded me very much of Solvang, CA. We had some great sausages, ice cream, and a swim in the hotel pool. It's been a few months since Ben's been in a pool, and he was a little hesitant. I think he'll warm up to it again soon.

8:20pm - continued . . . Just had to update you all and post a 2nd picture for today, one of Ben on the horse today at riding lessons. He was AWESOME! He rode the entire time! I never would have thought it would happen if you had asked me two months ago, but he did it! It's so nice to have good news to report. I'll post again soon, as I have more to talk about.

Archie and Ben

A wonderful side effect of Ben's horse lessons is his newfound interest in Archie, our Goldendoodle. He isn't afraid of Archie anymore. At least not most of the time. He actually seeks Archie out and hugs him. I saw him laying down on top of Archie in Archie's bed this morning, just hugging him. So cute. Part of it I'm sure is the fact that Archie is so soft, which really makes him a rewarding sensory experience. On the other hand, Archie is a patient dog, and tolerates this treatment very well. You really couldn't ask for a better therapy dog. Ben actually rode Bonnie the pony for about 10 minutes yesterday. Once he realized that as soon as he got off the horse, his instructor put him back on, he gave up and relaxed and rode the horse. I hope that next week this positive riding experience will carry over. He will lead the horse around the rink now too, not entirely on his own, but he doesn't know that. Unfortunately , we only have two lessons left before the move. However, there is a theraputic riding stable in Alexandria. I need to call them.

Ben's Car Box

This is a picture of what I made today - Ben's Car Box. Since we're going to be doing a lot of traveling, I collected some of his toys and bought him some new ones to keep out in our car. Not that it'll solve all of our problems, but it's a start anyway. This box also gives you all a clue into Ben's interests and development. Some of it might just be wishful thinking on my part. For instance, he doesn't really care about dinosaurs, but has a passing interest in them, so I put in one stegosaurus. Some toys are long time favorites, like the fisher price music player. I think this has got to be the fourth or fifth one I've bought. Ben's hard on his toys, so all this stuff is staying strictly in the car, or in restaurants if we're on a trip. I'll write more soon I promise. Oh, by the way, guess was it was doing outside my house this morning? SNOWING! I swear! It's June for heaven's sake!

Too Good To Be True - I Sure Hope Not!

Well, the treating the yeast bit has gone well. Won't say Ben's tantrums have gone away, but he's so much better about his mood swings. He's much happier overall now. I've given him Threelac every day, and I truly believe it's helped him. At school, they are giving good reports to me almost every day. For a while there in January through April, he had three or four bad days at school for every one good day. Pinching, hitting, crying, whining. All in all, his tolerence level has gotten better and he's much easier to deal with. However, nothing is perfect. Baseball was a bust. I had Ben in the Challenger Little League, and although he could get the ball and throw it back to his coach without a problem. He cried the entired time. Didn't like doing it. So after two practices and a game of crying, we've decided to let him off the hook. No point in ruining the other players fun time. He truly seemed to be the only one who wasn't enjoying himself. Still, we've started recreational horse therapy on Wednesdays and for the most part that seems to be going well. He won't wear the helmet and so he hasn't actually been on the horse yet, but this week he only cried a little and by the end seemed to be really enjoying the horse. He was even petting the horse's head and brushing her. I've been surprised by how much I like being around the horses too, I've never been around any for any length of time. They are such amazing animals! Their very kind, gentle and curious about people. It's very sweet to see their awareness of Ben. I will be sorry when we move since we'll have to stop the lessons. Oh yes. Let me tell you. We're moving. Again. True, we just moved here last summer, but thanks to the Air Force, they're letting us out of here to get better services for Ben. We'll be moving to the DC area, where Ben can get ABA, see some doctors who have a clue about autism, and do whatever else comes his way. So that's our good news. Goodbye WA, hello DC! Course that means a cross country drive is in the works for July. HOT HOT HOT!

The Yeast Beast

I've started treating Ben for yeast on my own. I'm just using enzymes and olive leaf extract, nothing harsh or harmful. Just in case he doesn't have yeast. I really wish I had a DAN doctor to help me out with all of this, but I don't. His pediatrician knows little about autism. His appointment with the Ft. Lewis developmental pediatrician has been put on hold until our schedules mesh. So far, I am cautiously optimistic. He had a few bad days and then a really good couple of days last Thursday and Friday. Yesterday (Saturday) was pretty bad, though. Several tantrums for no good reason. Had one tantrum this morning, but our CS (college student) took care of him for us all afternoon so we could take the girls to the mall and she said he had a GREAT afternoon. No tantrums at all. He's still spitting a lot, though. I'm going to be trying a probiotic called Threelac that I ordered as soon as it comes in from Amazon. It's supposed to be a very powerful yeast killer. One of the main reasons I think Ben has yeast is his white coated tongue, and his emotional ups and downs, as well as the sleep problems and the spitting. Yeast is a problem for a lot of autistic kids, Jenny McCarthy's kid included, so I feel it's worth investigating. I've replaced his sugar with Xylitol, a sweetener on which yeast cannot grow. Trying to keep the fruits to a minimum, but that's hard since he doesn't love meat or vegetables. He practically lives off fruit and carbs. Still, when Ben has an "on" day, he is SO on. Loving, compliant, cuddly, happy. I wish every day could be like that.

Ben

I suppose I owe everyone an explaination as to why I haven't been updating this blog. I think I'm doing some serious soul searching as to Ben's future. His impairment is severe. On the bright side, he's a happy, loving, cheerful little boy most of the time. On the not so bright side, he doesn't seem to be getting any better. Perhaps this is partly my fault. I don't know. Perhaps it's the beast that is autism. Still, most of the time I feel like I'm just treading water, trying to keep everything afloat. In doing that, I'm doing a sufficient job in most of my duties as a parent, but not a great job at anything. I've gotten help in the form of a college student, who comes to help with Ben four days a week. But she is not a therapist. Whatever Ben needs is going to have to be more intense than what he's getting now. I think his school is overwhelmed by his disability and the maintenance he requires. His therapists are helpful, but provide three hours a week. I hope somehow God will shed some light on this for us, and point me in the right direction. As for now I'm taking one day at a time. Unless I have some significant GOOD news to report, I'm not going to blog about my complaints. I don't think that's healthy for any of us.

awakenings

I am watching the movie Awakenings tonight on TV and I am reminded very much of Ben. How I wish that there was a miracle drug for him. I'm not asking for much of a miracle really. Just a little one. I know he'll probably never go to medical school, or even college. I know he'll most likely always have to live with me and Rob or in some kind of group home. I know he'll probably never be a conversationalist. He'll probably never be high functioning. I'll settle for merely functioning. I'd settle for him looking at books by himself the way he used to do when he was two. I'd settle for him actually wanting to draw a picture or do a puzzle or push a train around a train track. I'd settle for him actually wanting to play a game with his sisters. I'd settle for an "I love you Mom." I'd probably be over the moon if he ever said that! Still, I'd settle for "Want a cookie" or "More music please". I'd settle for being able to go out a family and not have to worry when and if he's going to have a tantrum. To be able to go to church together again. Still, I realize that there is no miracle. Not for Ben anyway. But I guess, in his point of view, he really doesn't need one. He's happy. He is who God made him to be. I'm the one who needs the attitude adjustment.

Swimming again

Hello everyone. Thing are in a holding path right now, and we're plugging along. The kids were out of school all last week because of snow and that was hard. Hope that doesn't happen again. Ben got very bored and restless and for the most part, we were snow bound and couldn't go anywhere. Things are better this week and on Monday Ben got to start swimming with me at a local Therapy Pool for people with disabilities. He is going at the same time his class at school goes, but since it's in the afternoon after he gets out of school, I have to swim with him. It was a lot of fun and he enjoyed it, as I expected he would. I have an interview with a college student today to help me in the afternoons. I hope she works out. I really need someone. Ben's stimming and spitting has not decreased any lately, he's still going at it as he always has. He's been sleeping through the night though, but I think it's because I have not given him anything to help him fall asleep. It seems that when I let him do it on his own, he sleeps better. So we've forgone the melatonin and Clonadine. Sometimes he's awake for over an hour after bedtime, but I'm learning to live with that if it means he'll sleep all night.

Updating Again . . .

Sorry to make everyone nervous out there. Yes, I am having a hard time right now, but I will get through it. I always do. I wrote the last post after a VERY rough night with Ben. He woke up at 1:30 AM and did not fall back to sleep at all. So I was up all night too. This has become increasingly and disturbingly common for him to do. The melatonin seems to be ineffective after a certain point. I asked his doctor to prescribe something else to help him sleep and she gave us Clonidine. Still, Ben woke up at 3 am last night, but he did go back to sleep after about an hour. So I don't know if the Clonidine works either. Either way, I see this whole sleep issue as a serious regression as he hasn't generally needed anything to help him get to sleep most of the time and it's only been in the last few weeks that I've felt the need to give him something every night. He's been more hyper than usual, bordering on the extreme. The spitting has gotten very bad, unless I am actively having him do an activity. After his crazy night two days ago, I decided to give him a break from all supplements and vitamins in case some of them might be causing this change. With the exception of Fish oil and his Clonidine, he's taken nothing the past two days. Interestingly, his school has reported that he's had two great days with them, except for the spitting, of course. I'll keep him off of everything for at least a week and see how to proceed from there. Anyhow, I am still finding it hard to maintain any sort of optimism at this point. Don't get me wrong, I'm not giving up on him, but I don't know how much I can pull Ben out of autism and into normalcy at this point. This is far and away the hardest job I've ever had. And I don't think I'm particularly good at it. Being Ben's mom requires a skill set that I've never excelled at, as I am by nature a studious, self involved person and not generally very social myself. It takes every once of energy to invent ways to interact with Ben and discipline myself to achieve all the practice at various tasks that he needs to perform, even if they're as simple as playing with a toy the correct way. I do plan to get some help very soon, hopefully I'll be able to snag a college student into helping me by engaging Ben in the hours after the girls get home from school. Finding someone who will be able to keep Ben engaged and is willing to keep trying to play with him even when he's in a bad mood may be a difficult task in itself. All in all, I'll keep plugging away.

Having a Hard Time

I'm sorry I can't write more often, but I think for my own health, I cannot. I may have to stop this blog altogether. It is getting extremely hard for me to have any optimism towards Ben as he seems to be deteriorating almost daily. Am going to call the doctor today for some sleep meds for him and an appointment with the Army Developmental Pediatrician in Seattle as soon as possible.

A New Start and New Inspiration

Well, Ben was diagnosed with autism three and a half years ago. At that time, he had very little meaningful language, a few stimming behaviors, could not play functionally with toys on his own, was non compliant, but was generally easy going and non agressive. Fast forward three and a half years. He still has little to no meaningful language, many more stimming behaviors, still can not play functionally with toys on his own, is still non compliant often, not quite as easy going as he used to be and is growing more and more agressive. That said, he has learned a little sign language, and the basics of picture exchange. I've tried many, many supplements, vitamins and more than one special diet in the past three years. I've been doing speech therapy and occupational therapy since he was diagnosed. I've done ABA for the past year and a half. However, nothing has changed him in the way that I've hoped. He's gotten better in some ways, worse in others. He'll have a great week at school, and then, for no explainable reason, will deteriorate in the pinching and biting his teachers and aides, being unable to sit still and erupting into a fury of spitting. So this is where I stand in December of 2007. I'm reading a book right now. It's called "Let Me Hear Your Voice", by Catherine Maurice. Wow. It's very inspiring. I feel like that I'm at the point where either I keep fighting autism with everything I have at my disposal, or I make the decision to decide to cope with it and put in place measures for simply dealing with Ben while doing my best to help the rest of the family adjust. I'm sorry, but I'm not ready for the second option. As for the first option, I feel that in the past I've relied too heavily on the remote hope that I might find "THE" supplement that will calm him down, make him attend, recover him from this nightmare. Frankly, I'm quite confident that this is not going to happen. Ben has not been a huge responder to anything. Ben is ALWAYS going to have issues. My goal right now is to push through as much as I can and simply force him to comply. Catherine Maurice simply says she decided not to tolerate any autistic behavior from her two year old. Of course, Ben is six, so he's had lots of time to practice his autistic behavior to get it good and ingrained in his brain. It could be that his brain can't really be changed at this point. But I'm going to make my best effort. Right now I'm so fired up about it, I can't tolerate any opposing views. Ben is not allowed to walk away from me when he's at home. He will stay with me while I do laundry, clean the house, so that he has no opportunity to stim or spit. I am trying to incorporate ABA like teaching into playtime, everywhere. Perhaps if I had done this at two and a half we wouldn't be in this boat.

Controlled Substances

Okay, I think Rob and I've come to the conclusion that controlled substances are probably not the way to go with Ben. The day he was on Concerta was scary, with strange oral stims like flicking his tongue out and in all day long like a lizard and what seemed to be more hyperactivity and irritability culminating in a late night, with him not falling asleep until after midnight. We've tried Adderall three times. I was hopeful the first time, because he had a magnificent, calm morning with no problems after I gave him the first dose. He was cranky in the afternoon, and wouldn't eat or drink. The second day (Thanksgiving) was also a cranky one, with a lot of spitting and he stayed up until 12:30, crying for the last hour before he finally went to sleep. But no, I didn't learn my lesson. I gave him Adderall again yesterday. He was sent home from school in the morning because he was so irritable and cranky and constantly crying that his teachers thought, surely he must be sick. He wasn't. It was Adderall. He had a lousy, crying afternoon, but cheered up in the later part of the day. However, last night he stayed up until 1 AM! He has figured out how to turn the light on in his room and proceeded to do that over and over despite my pleas for him to go to sleep. Poor little guy. I guess my only other option is Stattera, but I don't think I'm going to go down that path anytime soon. He's obviously not reacting well to all of this.

A Bit of An Update

Today is Ben's first day on Concerta. I had some problems getting him to swallow it, but he finally got it down. You'd think they'd invent an easier way for kids take this medicine. We've finally bit the bullet and decided that actual drugs might be necessary for Ben. So I'm crossing my fingers that it will make a difference in his hyperactivity and cooperation level. Actually, the last few days at school have been decent, but he's had some very bad days before that, crying, hitting, biting his teachers. At home he's been pretty good more or less, but I haven't been pushing him too hard. Have taken a hiatus from Verbal Behavior, as his Speech Therapist and classroom teacher were not supportive of the sign language goals we have for Ben, and want to use PECS (picture exchange) exclusively instead. I felt I couldn't really fight them if their hearts were not into it. We might as well be unified on some way to communicate. I guess I've been a little depressed about Ben's prognosis lately, and that's why I haven't kept up with the blog. It's hard to keep writing about something that makes you feel lousy. I don't know if he's getting any better, or worse. I can't tell if he's making any real progress. I took him to the doctor yesterday to get the Concerta started, and she thinks there's a possibility that Ben might have scoliosis. She couldn't tell for sure so Ben's going to have to go in for a spinal Xray next week. Just another apple on his plate, I guess. I apologize for being such a depressing read. I'll pick myself up for next time. Bye!

Take a Deep Breath and Breathe!!!

Okay, Kristin, it's time to calm down. I admit I've been both a little depressed and a little anxious lately. I'm not exactly sure the reason either. Ben's had two trips to the emergency room in the past five days, and though now he's on antibiotics and hopefully getting better (family - call me if you want the details but he's okay- really) the whole autistic kid in a hospital environment is enough to make edginess border on a little craziness. I can't think straight. I can't blog straight. And I haven't been either, since my last post was in the beginning of August and now it's already October. It's hard to gather my thoughts and sit down to do this, though there's been many things regarding Ben that are certainly worth reporting. I'll start with school. He's going now. The bus wasn't a problem for him like I suspected it would be, and he's been perfectly happy. Two. Has been doing a small amount of echolalia at his private Speech Therapy. She does a lot of "floortime" with him and he's responding to it! He's imitated "knock knock", "kiss", "go", "stop", and a few other words here and there. At home he's done "ni ni" (for bedtime) and "ma ma". His head gestures for yes and no have gotten stronger too, as has his receptive language. All good news, but I've begun a beaucoup of supplements and will be adding more. I'll talk about those and Jenny McCarthy in a later post. As for now, I have to sign out and get some laundary done.

Buzz Cuts, Dentists and Finally Therapy Again!

Well, I've got a lot to report. Even though Spokane is supposedly not the ideal place for a boy with autistic disorder to be, things continue to be working out swimmingly. And I do mean that literally. Because, you see, Ben, Katherine and Caroline have been taking swimming lessons for the past week, and will so again next week. They're given by the lifeguards at the base pool, and Ben LOVES it! Now granted, he isn't following the directions the teacher is giving him, but, bless his heart, he's plugging away anyhow, and enjoying every minute of his time in the pool. I casually asked the lifeguard if they had any adaptive classes for special needs kids, and he said that accomadations for special needs were already part of the curriculum and to go ahead and sign him up, he'd have an aide helping. Cool, huh? Ben and Caroline are in the same beginner preschool class, and Katherine is in a Beginner elementary age class. So that's going well. On another topic, Ben finally got in to see his new speech therapist, and I love the practice! Now it's a crowded one, albeit, and Ben can't be seen individually for a while, but he's going to be seen privately by the OT this afternoon, and will start a small group therapy next Friday with two other kids. But hey, it's a lot better than nothing. The Speech therapist was very positive, knows about Verbal Behavior and ABA, but actually does Floortime in her practice, and seems to see a lot of autistic kids. So I'm psyched. They also do Theraputic Listening in their practice, so I might get Ben started on that too. It's basically filtered music that the kid listens to that stimulates different parts of the brain to help it work more efficiently. My thinking is, it can't hurt anything!
I also got Ben into see his new dentist, as I suspected (e gads) he had another cavity. Good news-he didn't - some of the sealant on one of his molars fell out and resulting hole got stained, which looked remarkably like a cavity but thank goodness wasn't one. The dentist assured me that Ben's teeth actually looked good. For now. We're going to try to get Ben used to the dentist office little by little so that eventually he might tolerate an actual teeth cleaning. He's going in October when the girls have their checkups just to have a chance to get used to the whole idea of the dentists a little more. I love the dental practice, all pediatric dentists who are used to "special" kids.
As for the buzz cut, Ben got one. I was going to post a picture of him, but I have to actually take one first. He's so cute! We finally just did it, he usually gets one every summer. It becomes him. Well, that's all for now, I think I've caught up on everything. My, this sure was a long post!

Of Trampolines, Swing Sets and Lack of Therapy

We lucked out and inheirited a big trampoline and a swing set for our yard from our next door neighbors who just moved. Ben is a happy camper now. The big tramp is so much fun! Rob and I like to jump on it too. Been a little annoyed lately since I've been unable to get any therapists to call me back so Ben can start speech and OT, but one finally called two days ago and he's going for an evaluation on Wednesday, and might be able to start in a therapy group on Friday. Ben could really use some structure. I've been giving him some time doing ABA with me and playing, but sometimes he's more resistant to me that he is with a therapist, so I think it'll be good to have someone else to work with him. I also put an inquiry out on Craigs List to find some to help with the ABA a few hours a week and I immediately received a reply from a woman with a masters degree in special ed, who is a stay at home mom herself with a special needs daughter. Talk about luck! So I'll be meeting with her next week and hopefully that works out for the rest of the summer at least. Ben saw a psychologist last week and she said Ben might benefit from one of the ADD drugs, like Adderoll or Stratera. So we'll go to the doctor about that in the near future and see what she thinks. Ben's moods have been better lately, but I've taken him off Primal Defense. I think it was just too strong for our little guy. More later. Gotta go clean up breakfast. :-)

Go Spokane Indians!

Went to our first minor league baseball game here in Spokane, the Spokane Indians Vs. the Yakima Bears. I think the Indians lost, but we left after the 4th inning so I can't be sure until I look it up on the net. It was getting late and past the kids bedtime. Ben did great! He actually seemed to enjoy the game more than the girls. He was happy and rocked whenever the music played. He also liked the airplanes flying overhead. Ben's kind of into planes now, an there certainly are enough of them around here. I'm really starting to like Spokane now, it's got a certain kind of charm. I think it will be a fine place to live for a few years. This is my first experience even being in the Pacific Northwest. It's very open and the cities are more rural outside of Spokane, of course. I really like Idaho too. Couer D'Alene is beautiful! Lots of lakes, mountains, and pine trees. The base is great too, and so far, I've only met very friendly people. Speaking of people, I met with Ben's Special Ed teacher last week and we had a tour of the girls' and Ben's new school on base. It's only a couple of years old, so all the facilities are very new looking. My impression is that they're going to try to put Ben into a Kindergarten class with an aide, for at least part of the day. Now I'm not opposed to that, but Ben is a handful, as I'm sure they'll soon find out. So I have a feeling they may end up putting him in the Self contained class for the majority of the time. Registration isn't until the 3rd week of August, anyway. Spitting still his main preoccupation, but he is getting quite good at helping me with the laundry (sorting, putting it in, taking it out, etc) and doesn't spit when he's helping. I just wish he had more to occupy him and I'm sure the spitting would decrease. He has tons of toys, but isn't that interested in them without a grown up leading the playtime. I'll keep plugging away and post in a few days.

More From Washington

Well, I don't have a lot of good news to report, but I do have a little bit. Ben has learned how to shake and nod his head for no and yes. He does this in response to almost any question that he understands, and though he isn't perfect about getting the sign he actually means, he's pretty good. He's actually been doing this for about a month now, since I worked on it, but it's something. I've started a new probiotic called Primal Defense. It's supposed to be the best there is for autistic kids, but it does have some casesin and gluten in it from what I can tell. It's only been a few days so far, and nothing really to report. Ben's spitting is as bad now as it ever has been, perhaps even worse. I guess he's bored. I'm at the point now where the only thing I can do is ignore it. Pretend he's not doing it. Otherwise I'm constantly yelling at him, and that's not healthy for either of us. I want to get our little learning sessions back, but I tried the other day and was met with much resistance. It just shows me how far I've let him slide. He just spit on all his puzzles, on the picture cards, sometimes he just lets the spit hang around his mouth, dropping it and slurping it back in. I know if I asked I would probably be told to just work through it and not to let him get out of doing what I asked by spitting on everything. So that's what I'm going to do. Potty training is on the horizon, looming over me, but as of right now, I can't even really think about it yet.

Hello From Washington!!!

Yes, we are still alive and kicking! Finally in Washington now, we have our house and the internet - thank goodness. We're still settling in to our new digs, but a lot has been unpacked and all the kids seem to be enjoying their new home, Ben included. He's been quite hyper for the past couple of months really, and I'm anxious to get back down to business ABA wise and repair some of the damage the hiatus from it has caused. The Gluten free/ Casein free diet has been a little harder to maintain since we got here, as I'm still finding places to get the foods that Ben needs. All in all, everyone has adjusted to the move gamely, and the girls are busy making friends with all the neighborhood kids, and all the neighborhood kids are busy trying to figure out what the heck is up with Ben. I'm never sure how much to tell people, most little kids have no idea what autism is, and sometimes the parents have only a vague idea I can tell, but hesitate to ask. Apparently, there are some kids with autism out here, though - I found a Speech Therapist Practice that specializes in autism in Spokane. So that's good news, but all the military paperwork that occurs during a move is a royal pain the you know what. I think I'll take a few deep breaths now.

Finally On Our Way

After what seems like nearly forever since we've moved out of our house in Chapel Hill, we're finally on our last leg of our transition to Washington state. We're staying at my very generous, loving wonderful sister and brother in law's house. Yay! Rob and Katherine are on their long, cross country drive and Ben, Caroline and I are waiting for them to get there. My sister Barb has 3 dogs and 2 cats, and Ben and Caroline have taken to all the animals nicely. Ben seems pleased to have the dogs around and has a little smile on his face as he gets near them to give them a pat. I've had to convince him not to step on them when they lie on the floor, though. He thinks that's very funny. He absolutely LOVES the swimming pool here and spent most of yesterday floating around it while wearing his float vest. He kicks his legs and no longer has to hold onto the side of the pool, so I think he's going to be a little swimmer yet. He definitely enjoys water these days. Hopefully we'll be able to do a lot of swimming this summer on base. Well that's all for now, I guess.

Back in Chapel Hill . . . Again!

Happy Memorial Day everyone. May we remember the soldiers who are giving their lives for our country even as I write. We came back from the beach on Saturday and and comfortably settled into our hotel for the next couple of weeks. This is the nicest place we've stayed yet. And it should be. We all slept like rocks last night and Ben is in his usual good spirits. I haven't been consistently doing ABA with him, but I've been working on things here and there. Yesterday at the park he signed "swing" when I asked him to, completely by himself and I didn't show him how to do it. He remembered! He also did the same thing with "music" yesterday so I really think some things are finally sinking in. He also did his 5 pc horse puzzle completely by himself yesterday, even the tricky neck piece. This upcoming week will be a busy one for me, I have two appointments to discuss the results of the school systems re-evaluation of Ben. I'm so glad the evaluators, or at least two of them, got to see Ben when he's working with Kim, his ABA therapist. I don't think his day at school showcases what he's really capable of doing. I let you know how the meetings go, though I'm preparing myself for a low functioning evaluation, and I'll try not to take it too seriously if that's the case. I don't like to put limits on what Ben might be able to accomplish.

Greetings From Kill Devil Hills!

We're in Kill Devil Hills on the outer banks of NC this week for a relaxing vacation away from our lack of house in Chapel Hill. Our cell phones may be down for a day . . . I seem to have misplaced the chargers and now we have to find a place to buy one. We're heading down to the Cape Hatteras light house today (after mass in Nags Head) and we'll probably be climbing to the top. I'll take pictures. Rob and I both have a thing for lighthouses. Maybe we'll own our own one day. All in all, the kids are doing well. Everybody slept great last night. As always, keeping Ben on the GFCF diet is a royal pain in the you know what when we're traveling. We're doing our best but if you can't carry a Whole Foods around with you, it can be difficult. Ben is really have a great time so far. He LOVES the ocean. Our house that we've rented is a little cottage on the beach. It's simple, nothing fancy, but I think it will be perfect for a week of hanging around. I doubt we'll be hanging around too much, there's actually quite a lot of things to see. We'll go dolphin watching a little later in the week, see Roanoke Island (home of the Lost Colony), Manteo, Duck, Corolla, and maybe the Bodie Island lighthouse too. This area is so full of folklore about sea farers, pirates and ghosts, it's really cool. I'll check back in soon!

All is Still Well

but I'm starting to go crazy in this little apartment. Ben was a little cranky this weekend and didn't want to eat everything he usually does, both of which I attribute to the new crowns he had put in on Friday. He screamed bloody murder the first few times I gently brushed his teeth, but this morning, he didn't cry and tolerated it very well, so I can only suppose that his soreness is going away. I sent him back to school today and his teachers said he did fine and was in a great mood. He's been sleeping well since last weekend (knock on wood!) and since I've been sleeping with him, that's great for both of us. We only have two bedrooms in this apartment and I feel I can't risk waking up the girls with his midnight antics. I really look forward to all of us having our own rooms, and that seems to be getting a little closer to reality these days. Rob is out in Spokane right now and has been looking at houses both on and off base. He visited the school on base today and was impressed the occupational therapist there, whom he said seemed great. The special ed teacher was nice too, he said and right now it looks like Ben will be in a class of seven, with a teacher and two aides. There is only one other boy with autism in the class, and it's K-3. So we're cautiously optimistic that living on base will work out for all of us. Rob says the base houses are fine, and we can have one assigned to us rightn now so it will be ready in June. Cool, huh? I can't wait until June now, so we can get out of Chapel Hill and get on with it. :-)

Surgery is Over, Ben's OK!

Hello everyone. I just wanted to let you know that Ben had his dental surgery today at Fort Bragg - finally! - and everything went well. He was in a cooperative mood and the dentist was able to get everything done that needed to be done. That's a real relief for us, as we're moving next month and would hate to have to tackle dental problems first thing. He's got a mouth full of silver now, but thankfully no more cavities. He tolerates brushing pretty well now, and flossing too, but his damage was done long ago when he was a younger lad, and no amount of fasidious dental hygeine was going to take care of damage already done. But all of it's on his primary teeth thank goodness, as Ben hasn't gotten his 6 year molars yet, nor has he lost any teeth. He's had some crankiness this afternoon, but the anethesiologist said that was to be expected.

We are awash in boxes

And today they're moving them all out. We will have an apartment tomorrow, with actual cooking untensils and everything. Dare to dream, I say. I dislike this part of moving, but the kids seem to be taking it gamely. Rob's brother Jay is here visiting, and everyone has had a great time playing with him. We all went to the mall last night to find some dinner, and Ben was in rare form. The spitting is still a problem, but he's been so absolutely happy and dare I say, exhuberant, that it's very hard to get angry at him. He's such a happy kid most of the time and a real joy to have around. Sure, he gets looks from people who don't know him, but I don't think there's anyone I know who enjoys everything life has to offer more than Ben. I writing this post today using my neighbor's unsecured internet connection (shhhh!) and so for the next few weeks I may be even more sporadic than usual. At this point, it's starting to look like we probably won't be able to live in Idaho after all. The nature of Rob's job as a commander doesn't look like it will permit him to live far from base. And it's remotely possible that we may be moving again in a year and a half (not likely but possible) so perhaps buying a place wouldn't be a wise move. Right now, I'm planning to keep working with our ABA therapist over the phone and through email, even if that means our insurance won't foot the bill for non-face to face contact. Ben's benifitted from ABA moreso than any other type of therapy and I really support the goals it sets for Ben's functionality. Still, I'll try to enlist some help doing it from one of the local college students. I'm an optimist, I'm sure it will all pan out.

I Think I Might Be Loving Idaho

Okay, get this. I just got off the phone with a ABA person in Idaho. Apparently, Idaho is one of only 3 states that pays for kids with autism to have ABA therapy. 30 hours a week! Regardless of your income! Holy cow! So, as much as I want to live on base, we have to seriously think about living in Idaho instead of Washington. It's a longer drive for Rob, but Ben would get 30 hours of ABA a week. The therapist I talked to is the director of a school in Coeur D'Alene which does the ABA therapy and has room for Ben. And it's free of charge, once all the paperwork gets done. Oh my gosh. I think I'm going to faint. I'd better go.

Ajax, Figure Skating and More spitting

Hello again, all! We're gearing up for our move now and getting quite serious about it. Today will be our last "relaxing" day. The movers come to pack us on the 25th, and we'll be moving into our temporary apartment over that weekend. So now I'm figuring out what I want to bring with me, so the movers don't pack it. Ben found the Ajax dish soap yesterday and comandeered it from the sink before we knew what he had. It's orange smelling and that's why he liked it, I guess. Anyhow, he spilled it all over the wood floor and we think even put some in his mouth, but I can't imagine it tasted that good. Needless to say, we hid it and locked it up. He's been doing fine lately, and has been happy and social. We had figure skating on yesterday afternoon and he seemed to like it, especially the spinning. I've been able to work with him pretty consistantly and per Kim (his ABA therapist) I have been concentrating on the "do this" command to request imitation from him. I went on a puzzle search yesterday for a very small jigsaw puzzle, as he's almost solved his 5 piece Horse inset puzzle. Jigsaws are supposedly the next step. I mangaged to find a baby jigsaw set with 4- 4 piece puzzles in it at the Children's store, so I'm ready for that goal. You wouldn't believe how few and far between little jigsaws are! Sure it's easy to find 9-12 piece puzzles, but Ben clearly isn't ready for that. He still has to get the idea of lifting up the jigsaw pieces to make them fit. As far as talking goes, he's said "hug" a few more times in context, but I haven't had much luck in getting him to imitate any sounds I make. I guess that's par for the course.

Hugs

Ben talked again yesterday. Rob and the kids were outside in the front yard at around 7:30 and since it was close to bedtime, I went outside to get them. Ben was in the driveway playing with a gum tree pod (he loves those). I sat on the front steps and called to him. He looks up at me, drops the pod and comes running to me saying "Hug, hug, hug, hug, hug" and runs into my arms. I didn't ask him if he wanted a hug, I just told him to come inside. How cool is that? Rob and I both heard him do it, and we were very surprised. Rob says he thinks Ben does these things now and then to give us hope. I don't know if we'll ever hear that word again, but it was nice to know he has the ability and that he has that happy word inside him.

Strep Throat

Well, I went to the doctor today and got the news: I have strep throat. I'm not sure I've ever had it before but it sucks. Big time. Worst sore throat I've ever had. Swallowing is excruciating. I'm on antibiotics now so hopefully I'll be better soon. But enough complaining about me and my problems. I've been feeling guilty about not having done any ABA with Ben lately, on account of his being sick and now my being sick and I'm trying very hard not to infect any of the kids. Ben was acting so funny last week when he was sick, I can't help wondering if he had strep as well. He's still not eating a whole lot. Rob bought him McDonald's french fries today and he didn't really have any interest in them. Very unusual behavior as french fries are just about his favorite thing. Next to cookies. He's been very affectionate and loving as usual and cheerful enough for the most part. I thought he said "ball" a few times last week. Could of been a fluke but I'll keep trying to pull it out of him. Also, he's developed a strange habit of whistling. He won't whistle on command, but he'll do it randomly on his own. It's so cute. Katherine and Caroline can't whistle but Ben can. Go figure.

Surgery Cancelled, Ben is Recovering

Ben was supposed to finally have all his crowns put in down at Fort Bragg yesterday, but sure enough, he got sick on Wednesday so we had to cancel his surgery once again. Rescheduled for May 4th. He was okay this morning so I sent him back to school and he seemed perfectly glad to go. I think he really likes school. On Wednesday afternoon he spent most of the time just laying around on the couch, something he only does when he's running a fever and doesn't feel well. He even snuggled with me while I watched Oprah! I kind of like the cuddly, calm, needy Ben, but I'm glad he's feeling better, for his sake. His appetite seems to be back too, after eating very little for the past couple of days. Right now I've got a big batch of Gluten Free Banana muffins in the oven, hopefully he'll be tempted enough to have one when he gets home. The girls and I like them too, even though they're GF. Most GF stuff just isn't all that tasty but sometimes I find an exception.
In other family news, Katherine finally lost one of her top front teeth today. I gave it a little yank when I brushed her teeth this morning and out it came. No pain at all because it was REALLY loose. She's a snaggle tooth now, very cute. Guess we have to expect the tooth fairy to make a stop by tonight!

Life as it Is Right Now

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

Spitting and Self Involvement

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

1 in 150

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

New News

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

Growing Up In Fits and Starts

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

Snow Where We Live!

Back In the Saddle Yet Once Again . . . .

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

Mozart and the Whale

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

A Ride on Dumbo!

Everyone is Better Now, even me!

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

At Home with 3 Sick kids . . .

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

Mr. Smiley Social Boy

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

A Sunday Update . . .

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

Look At My Cool Duds!

Glad We're Over That!

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

Something to Think About

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

Refrigerator Mothers

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

Zoom Zoom Zoom

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

Autism Commercials

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

Buying New PJs

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

Potty Training Aborted!!

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

A New Groove

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

A Blow Up

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

Ploodles, Fire dogs, Hamsterds, and the Crickets

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

Ben's a Small Angel

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

We're Mean, Mean Parents

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

Updating June Has Arrived . . .

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

Nothing too new to report

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

The baby birds

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

The Baby Birds In Our Planter

I Saw This Video This Morning

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

Kristin

I Have So Much To Say

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

Happy Easter Everyone!

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

I Almost Forgot I Had a Blog . . .

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

I am constantly learning from others . . .

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

Ben LOST it !!

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

Some progress is made

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

WooHoo! Have I Been a Lazy Blogger!

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

Trying to get some normality . . .

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

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

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

Pondering Our Next Assignment

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

Ben Had a Good Day

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

What is up with Austim?

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

Taking a moment to breathe

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