Wednesday Morning - off to school!

Ben has started potty training at school and at home yesterday with his therapists. He's had some success, but also some accidents. He doesn't seem to get the fact that he is supposed to put himself on the potty and not wait for someone to tell him to do it. His therapist told me to keep a pull up on him when he's not at school and/or in therapy, but keep taking him to the bathroom every half hour or so. Sometimes it works, and sometimes it doesn't. Right now, he doesn't seem to care whether he's wet or not, even when wearing underwear. I had kind of a rough morning with him and I'm still recovering. I woke up myself around 3 am and couldn't get back to sleep, though I desparately wanted to. At 5, I heard Ben wake up and try to come downstairs. I brought him back to his bed and told him it was still nighttime and he couldn't get up yet. He accepted this the first two times I did it, and I was able to lounge in bed until about 5:30 before he tried again. This time, he threw a major tantrum when I tried to put him back to bed. He was so loud and angry I'm very surprised the girls were able to sleep through it all. He broke one of my coffee cups by throwing it on the kitchen floor and dumped the water bowl. I felt pretty patient with him as I tried to calm him, but maybe I was just tired. He finally calmed down with the help of some of his favorite music, and sat on my lap for a while, cuddling. While he sat with me, I thought about what's going to happen if he does this when he's 10, or 15. He'll be a lot stronger then. Hopefully, we'll be able to improve his coping skills. If not, I'm afraid we're in for it.

What to do with the little guy

Poor Ben, though I suppose he thinks he's getting away with something. He's only had one day of therapy this week because his therapists have both been sick. Coupled with him being sick last week, and the snow, he hasn't had to intensely work at anything in quite a while. Other than school, that is. Next Tuesday begins his big potty training week. I'm going to bring him into the lab at the army hospital for some blood work first thing on Monday morning, and let Rob put the girls on the bus. He's got a whole slew of tests that Dr. Compart ordered and she's waiting on the results. The next day, it's in for the long haul! His school and therapists are going to try to teach him to go to the potty when he needs to, so that he isn't prompt dependent, i.e., only goes when we tell him to. If that doesn't work, we'll put him on a timed potty schedule. Either way, it's goodbye diapers and hello big boy underwear. And hello mess.

It's a Beautiful Day in the Neighborhood

It's kind of hard to believe less than a week ago we were about to have a snowstorm. Well, all that snow's gone now, thank goodness, and it's an absolutely gorgeous day outside. All my kids are better, more or less, and I will be happy to send them all back to school come Monday. It was a little rough there for a little while, but it passed, as all things do. Ben has been a little charmer for the past few days. He's smiling, cuddling with me, and generally being a good boy. Still spitting, occasional gasping noises, but for the most part no screaming or crying. He is still getting completely wiped out at around 7:30 pm, and I'm not sure why. His schedule hasn't gotten any harder, but every night, right before bed he winds down and sometimes falls asleep right where he's sitting. I'm not complaining but it's unusual behavior for him.

Ben's Mom

I am now officially a celebrity. I was at Target, doing my usual Targetty shopping, and I noticed that a special ed bus was parked in front of the store, and I assumed that there were probably some kids somewhere in the store. Sometimes they go on field trips to gain real world environment experience. As I was approaching the front of the store with my cart, I went past the kids but didn't see anyone I recognized. Just then, one little boy with Down's Syndrome shouts out "Hey Look - there's Ben's Mom!" That just made me smile. I didn't know who he was but he sure knew who I was! His teacher asked him how he knew I was Ben's mom and he said it was because Ben rides his bus home. He must see me every day when I drop Ben off or pick him up from his bus. I thought that was very cool and I told him so.

Sickness and Wellness

Ben came home from school early yesterday with a fever. I put him on the couch, turned on the tv for him, gave him his favorite fuzzy CARZ blanket and he layed there almost the whole afternoon and even took a nap at one point. It would have been kind of nice, actually, if it hadn't been so pitiful. I'm not used to having a quiet, tv watching kind of Ben. His fever hovered around 100 and 101, but I never gave him Motrin, since I've been told that if it's a low grade fever, it's better to let it burn off by itself. I put him to bed promptly at 8pm and didn't plan on sending him in today. But when he woke up bouncy, happy and feverless, I changed my mind. Off to school he goes, and I hope he stays there. Caroline was sick since Saturday night and today is also her first day back. Finally!

Auditory Discrimination is Ben's Game!

All right, some good news to report. I have to take it where I can get it. Ben was bobcat of the day twice last week. That's the award his elementary school gives to the student of the day. Granted, his is a small class, but apparently he's been behaving really well on the days that he behaves well. Got that? On the other days, his "off" days - well, see the last post. Today he had an ABA session even though school is out, and he's found his new forte. For a while now, his teacher at school has been writing home that he's doing really well at auditory discrimination. I didn't really know what they were refering to, but apparently there's a whole ABA program designed to get a child to listen to a sound and then find the picture that corresponds with the sound. For instance, the sound of a duck quacking will be played, and then the child will pick the picture of a duck out of a set of different pictures. Well, Ben is very good at this! Today his therapist probed him on a whole lot of new pictures and sounds that he had never tried before and he got almost all of them. He apparently knows what sound a frog makes, and even how a toilet sounds when it's flushing. Cool, huh? It's nice to find something that Ben excels at. Every once in a while, I get a glimpse of how smart he is.

Ben Meets the Good Doctor

I drove Ben to Maryland today for his appointment with his new DAN! Developmental Pediatrician. It was a less than stellar visit on his part. To put it bluntly, Ben went after her glasses and scratched her face. I guess it shouldn't entirely surprise me, but it is embarassing to have your child do that to someone. She was good about it, but I felt horrible for the rest of the visit. Especially after I had said last week that he wasn't very aggressive. I guess the operative word is very. Still, I should know better than to blog after a day like today, but I thought everyone would want to know what happened. As for her thoughts on Ben, I won't find that out until next week, when I go back by myself. Today's one of those noisy weird days for him, and his verbal stimming (ie yelling, making gasping sounds) is high. I'm feeling less motivated than usual and a little sad that I can't take the girls to an event at their school because I can't take Ben with us on a day like today. I'm sure they'll get over it, but still, it makes me sad. His ABA therapist is sick today, so no therapy for him either. *sigh*

Got the Auth

Well, I recieved the authorization for the out of network doctor that Ben is going to see, but of course, it has the wrong insurance codes on it. It's always something, isn't it? So I have several phone calls lined up for tomorrow morning. I'm faced with a forecast for snow again on Monday and Tuesday, and I really hope that doesn't mess up my Wed morning appointment with his new doctor in Maryland. Her office person said I can do a phone consult if the kids have a delay, but Tricare doesn't pay for phone consults. At least I don't have to bring Ben to this first appointment. It's just going over his medical history, filling out paperwork, determining what tests might be needed, etc. I'm still bummed out by all the ice all over our driveway but the weather guy tells me it's supposed to warm up today, so maybe I'll be lucky and it'll melt. I joined the rec center across the street from us for the next month, since the weather has been unpredictable. At least I'll have no excuse for not getting some exercise. They have a couple of tread mills, some weights and an olympic sized indoor pool. If all goes well, I'm going to head over there tomorrow after the kids get on their buses. Oy!

Autism and God

I have a dear friend that I met in Washington last year who has a child with severe mental and physical disabilities. Her daughter can't sit without support, and the doctors are not even sure if her brain can see what she takes in with her eyes. Still, my friend is extremely close to God, and sees her daughter as God's precious gift to her and his way of humbling her to His greatness. I admire that philosophy, but, not being of the same religious philosophy, feel that I cannot fully comprehend it. So let me tell you about me and God. When I first started to get an inkling that Ben had something wrong with him, I was angry. And bitter. I remember distinctly sitting in the Explorer in the parking lot of Katherine's preschool waiting to take her in when it hit me full force. Here I was, the mother of three kids three and under (Kath was 3, the twins barely 2), and I was having to face the fact that my son wasn't right. I was exhausted from two years of baby care, constant feedings, diaper changes, supervision and the breaks were few and far between. And God had the audacity to make one of my precious children have something wrong with them. How dare he? Hadn't I worked hard enough? Wasn't I punished enough by having twins right on top of my eldest? I remember crying about it for the first time, and certainly not the last. Still, as I became surer of Ben's challanges, I began to "forgive" God, but I was on neutral terms with Him. If we didn't go to church for many months, well, God was the one who saddled us with all these problems, so He of all beings should understand how hard it was.
I've come to realize that in the grand scheme of things, Autism is only a drop in the bucket. Yes, I do go to church regularly with the kids even with Rob gone. Ben's gotten easier to take to church as long as he has his ipod. My attitude towards Ben during church is almost self righteous. I'll do my best to keep him quiet, but if he's not perfect, the people around me can just deal with it. God made him too. And God made him just the way he is. I don't worry about Ben's salvation or his eternal judgement. I think he's already home free. Still, I do often think about whether Ben was made my son so he could teach me to be a better person. But thinking that way starts to bring the bitterness back in me, especially when I see many, many other people around me who have perfectly normal little kids. Why am I so lucky? What did I do to deserve all this "luck"? So I find for me it's better not to involve God in "giving" me a kid with autism. It happened because it did, not because I think there's some grand scheme at work. Tragedies far worse than Ben's happen to people far better than me. So I guess it's best not to analyze it too much.

January is a cold, cold month. . .

I wanted to say that on the whole, Ben has been doing a little better. I've started him on this anti fungal/yeast killing program and taken him off of almost all of his other supplements except for the cod liver oil/primrose oil combo, and calcium. He'd been having a lot of VERY hyper days in a row, and I was pretty sure it was the yeast rearing its ugly head again. He's still hyper, but not deliriously so, like he was before. The crazy laughing has gone away and once again he is doing well. I hate to take him off the Nu Thera, as when he's on it he performs much better cognitively, but I may try to start putting it back into his supplement intake after I add Zinc and Vit C back in, to see if the crazy hyper thing starts again. Hopefully he can continue to take it as I think it definitely benefits him. I finally got the authorization from the insurance company for him to see a developmental pediatrician, but of course, they gave it to him for the wrong doctor. The autism specialist that I have the appointment with is a DAN doctor, and isn't in the "network". I may have to end up paying a good amount out of pocket if I lose my argument with the insurance people. But I really want Ben to see her. I need some guidance. Sometimes I just feel like I'm fumbling around the dark, trying things here and there, hoping this or that will work. I told you he's been doing well, and he has for the most part, but he had an awful tantrum this morning while waiting for the bus with the girls. It could have been the cold, but for the life of me I couldn't get him to put on gloves. He just ran around crying so I left the girls at the bus stop and walked back to the house with him yelling the whole time. When we got inside, it didn't stop until I finally took out the I pod and put it on him. I played his favorite song, Maroon 5's "Won't Go Home Without You", and it calmed him down after a couple of minutes. I should really write a fan letter to Maroon 5 and tell them how many times they have saved my sanity. Usually, they are great tantrum quellers. By the time his bus came 20 minutes later, Ben was a happy camper ready to go to school. I was so wound up though that I actually looked forward to running in the 30 degree cold just so that I could destress. I definitely felt better after I did. I'm trying to work up to a 5K using the podrunner interval podcast. Archie our dog loves it too. That's been my morning!!

January Update

I've been mulling over whether to keep this blog going or abandon it all together, and I really haven't decided either way. I'm not sure what is pulling me in the direction of abandonment. It's true that lately I've felt my time is better used on other pursuits, and frankly, I find regularly keeping up with something like a blog rather draining. When I first started this blog in 2005, my intention was to use it to keep track of Ben's progress using dietary and biomedical changes, and hopefully I would be able to consistantly post about progressions that he made. As I've become more intimately involved with the beast that is autism, I've realized that nothing about it is cut and dry. If you read back into 2005 and 2006, you'll find entries where Ben has made steps and progress that were superficial, and weren't repeated. In fact, that's been his entire story. Ben gains a skill. Ben loses and skill. Ben stops doing one stim. Ben starts up another stim. Something, like Threelac works for a while, progress is made. Then it stops working. In no sense am I ready to give up yet, but chronicling my hopes and disappointments has become taxing emotionally. It's not that Ben hasn't made any progress since last summer - don't get me wrong - he has, academically at least. This is a good place for him, probably as good as we're going to get, short of an enormous financial windfall. He's getting therapy four days a week and his therapists are wonderful. His teacher is wonderful too and he looks forward to getting on his school bus every day. Even though everything is "right", I'm afraid there are no miracles for Ben. New sounds, new behaviors, emerge every day. The spitting is constant. I understand when his extreme behaviors make others not want to be around him and therefore us. It's perfectly understandable. The average person isn't used to the backgroud noise that is a daily occurance in our house. People are freaked out by spit. I wish I could turn it all off, turn off the noise, the hysterical laughing for no apparent reason, the impish moods where he must do everything he knows he's not supposed to just to see if he can get you mad so he can laugh at the funny faces your making . . . . but I can't. I am still searching. Searching for ways to cope, searching for ways to better integrate Ben into our daily lives so that mundane tasks like waiting for the bus with the girls or going to church don't turn into neighborhood spectacles. I've accepted this is the way life is now, but I believe that one day it can and will be better. It's got to be. There's got to be an answer that we haven't found yet that will help. At least a little bit. So I may still periodically update this blog if anybody still reads it. Every now and then I might still have something to say.

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.