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.