Starting School in VA soon...

Well, we are settled into our new home in Virginia and we love it. In fact, I can hardly believe our luck. Something's gotta give. Ben is starting first grade on Tuesday and we've already met his teacher and she seems awesome. You could tell just from the open house that she was all about making him work for things. She was bright and energetic and I think he's really going to thrive in her classroom. He'll be in a K throught 2nd classroom with six other students, that teacher and two assistants. Their setup is for ABA, and they try to incorporate it into everything they do. I think he'll be well taken care of. On top of that, after he comes home from school, he'll get 12 hours a week of therapy provided by our friendly neighborhood Tricare ABA provider. I've already met his BCBA (Board Certified Behavior Analyst) and his therapist, a BCBA in training who already teaches full time here as a preschool special ed teacher. She'll teach him two days a week and the other therapist will get the other two. On top of all that, I think we'll finally get some respite care for Ben on the weekends provided by Tricare, since we are finally being able to use some of the ECHO services. This is a world of difference from anything Ben's ever gotten and I'm so glad we moved. I miss my friends in Washington, but I think Ben is going to have a great year!

Now Coming From . . . Alexandria!

Well, we're here, finally! We made it in yesterday and we've taken a look at our house and so far, we like what we see. But we haven't seen the inside yet, as we are getting our keys this morning from the property management company. It's in a nice established neighborhood, and on a cul de sac, so it feels safe. We have a fenced in back yard for the kids and Archie to run around in, and it even has a cool trellis structure and tomato plants left over from the owner. Rob just called the moving company and our things are supposed to be delivered tomorrow. So we hope that stays on track. The whole Alexandria area we live in is alive with excitement and activity. There are tons of stores around, and a library within walking distance. You know where my priorities are! The only blip that I've come across is my somewhat futile search for a measles only vaccine for Ben. Neither the nearby base nor the health department for the county has one. They only offer the MMR, which also has mumps and rubella vaccines, and Ben definitely doesn't need all that in his system. I don't know if I'm going to be able to find one. I'll try to make an appointment with a doctor as soon as I can, but I'm not optimistic at this point. I have the feeling that I'm going to have give in and give him the MMR and hope for the best. How I wish the gov't wasn't such a bully about vaccines! I feel that I have to give in so that Ben can get the help he needs, even though I know the MMR isn't in his best interest. I think Jenny McCarthy is right. Vaccines aren't bad things, but there's definitely TOO MANY TOO SOON!

Missoula, Billings, Bismarck, Minneapolis, Madison, Oh My!

Okay, so I'm getting really tired of driving. As I write this, I'm in the HoJo in Madison, Wisconsin waiting for my family to wake up so we can get breakfast and continue our journey to Indianapolis. By Sunday, we should be in Alexandria. The kids are holding up pretty well, but, well, they're kids! Flexible creatures that they are, they aren't fazed by much. Their parents on the other hand are going a little loopy. There is such a thing as too much family time. Hotel rooms aren't known for their size. Still, Ben has been pretty good this whole trip, though I have to watch him like a hawk when he walks along a city street. He seems to have a dirty old piece of gum radar, and will find anything that I don't want him to have. He walks around town holding my pinkie, and will not forgo the pinkie for any other finger of mine. It's his favorite finger. Go figure. He's been off his gluten free diet for over a week now, so consequently, he's been quite stimmy and hyped up, moreso than usual, but agreeable and cheerful for the most part. Haven't really been able to give him any supplements at all. Still, only three more days of driving and then my life can get back to some semblance of normal. I hope. Bye!

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.