Progress, Regress, Progress, Regress, etc...

Sean is on the upswing again. He's doing really well, probably the best he's ever done. And after my rant about needing to put him back on his GFCF diet, he's still eating gluten - and plenty of it. I'm totally confused as to what's going on! Though there are several issues here that have played, or may now be playing, a role:

We went through a move 5 months ago, as you already know, and that may have affected Sean more than I realized. It was chaotic for a few weeks, and just settling in might have been more of a strain on him than I realized. During that transitional period, Jen, his speech therapist, was having to deal with a defiant child, or an extremely spaced out child. She would ask me what I was trying (in terms of biomed treatments) lately, and I would tell her we were "au naturale". I had no idea what was causing the annoying behaviors. Thankfully, they cleared up on their own, with the help of time and a little discipline (yeah, kids with autism need discipline too - that's half the battle if you ask me, but I'll save that topic for another post).

He also went to summer camp for the first time, and he was clearly upset when I left him there the first few times! If I wasn't sure if Sean truly loved me before that, I knew he did without a doubt after that. I could see him in my rear view mirror, trying to run after my car. It really broke my heart, but it also helped me to realize that he was acting like all kids do who are attached to their parents. And when I picked him up in the afternoon I got misty eyed to see the glee in his face when he saw me pull up. He ran up to my car and I could see him saying, "Hi Mommy!".

Also, Sean had been off of school for 4 weeks due to a summer break, and was now back again, but with a new van driver and leaving from a new house. That must have freaked him out, though to what extent I don't really know. He's a pretty stoic child, so I think when he gets confused or frustrated, it shows in ways that are non-typical to those who are on the outside looking in.

When school started up at the end of August, right after coming home from Disney, Sean was excited to ride the bus (the little yellow bus) and settled in very quickly to his new routine. His teacher Jaime is wonderful, as are Mary and Beth, the classroom aides. The kids are all adorable and it all seems to agree with Sean. We hit the jackpot there.

Sean can say all of our names now, so that everybody can understand what he's saying. Emily and Lily are still a challenge for him though. Emily is pronounced "Em-a-wee", or sometimes "Em-a-me" and Lily, the dog, is "Wi-wee" because he can't pronounce the "l" sound yet, but he will. Last year he couldn't even say "cookie". I remember fighting with the old speech therapist from Tawanka over it at an IEP meeting. He couldn't make the "c" sound. And now look at him, saying so much. Wow.

Last night, Annie was playing with a V Tech laptop that Sean has been really into lately, and he was extremely bothered by it. He covered his ears and and was humming because he didn't want to hear those computer sounds if he wasn't the one making them. I immediately went over to him and told him he needed to cut that out and asked him what was wrong (I already knew of course, but wanted him to communicate with me). He said, "Annie, don't play with the pink computer." I told him he did a great job using his words, but that Annie was having her turn and after he took his bath, he could have his turn again. He was satisfied with that. That's huge.

The last thing I want to mention today is that Sean's OT from school sent home his weekly progress report and told me that Sean is making AGE APPROPRIATE letters. He couldn't even hold a pencil very well over the summer (I would fight with him over it). His coloring has improved so much too. He's trying to stay in the lines. His fine motor is really coming together. I'm taking for granted how much he's progressing, because there are so many more things I want him to start doing. But when I stop to think about where he started, and how one of his therapists, when he was in Early Intervention, called him "low functioning", I feel so blessed that my child has come so far!

Back To Square One

Well here we are at the end of September already. It's been a busy summer for the Sypek family. We moved, spent most of the summer trying to get organized in our new surroundings, and then left for Disney a week before school started.

Sean got off the GF/CF bandwagon in early June. We also decided to take a break from all the chelation appts. over the summer. At first, all seemed fine. But looking at him NOW, compared to how he was pre-June, there is definitely a downward spiral in the behavior department. And I have to admit, during the 18 months we were doing the diet and the other biomedical interventions we were implementing, Sean was always making steady gains. They weren't all huge, or even in close succession, but at least we were always conscious of the fact that we were consistently moving in one direction: forward. Mike and I used to wonder if it was just Sean's age and his school routine (and finally finding a fabulous speech therapist) that was responsible for his gains, or if it was the biomedical route we were taking. Or both? We were resigned to thinking we may never know, but that we were content in knowing we were doing all we could be doing to help him.

So I know what I need to do. This diet sucks, it is so much work, but I feel so confident in my decision because I now know that it was really helping him. And I feel like a jerk for letting him go off it to see what would happen because now we're behind on our progress. Sean has a lot of catching up to do.

In Disney, he was really good. The lines didn't phase him, but I think that's because he spent most of that time in his own little world, daydreaming. We did have the pass, which helped, but the lines weren't really bad the week we were there. I took him on the "Tower of Terror" and his expression was pretty peculiar while we were flying up and down, up and down, up and down, well, you get the picture. He was pretty expressionless. I couldn't tell if he liked it or hated it. I think he may have just been taking all those crazy sensations in; he was on overload! He loved the Runaway Train, that made him smile. He also loved Shamu, he was craning his neck for the best view of the whales.

School is going really well. We are very happy there. His teacher and her 2 assistants are awesome. She sends home daily email updates with pictures and tells us what they're working on. There are only 5 kids in his class; they have 2 autistic support classes this year. Last year there was only 1. They are integrated with the "typical" kindergartners at recess and for specials (music, art, etc.)

Sean's speech is still progressing, but I feel like his words have been slushy lately. He's not articulating as well as he was before. But he's still using language for many things and I am so grateful for that! Just today he asked his brother for a drink. He said, "Austin, I want some juice please. I'm thirsty."

So we're back on the biomed bandwagon. We shouldn't have been off for as long as we were. But in a way, it's so nice to see how much progress he's made because of it!

Kindergarten Placement Update...

Wow, I need to update way more often than I have been. It definitely doesn't seem like 3 whole months since the last time I gave an update. An awful lot has happened so I'll try to get you up to speed without writing an entire novel, which I swear I could probably do.

So we went through the whole evaluation process and had the meeting with the team of our local school district regarding Sean's placement for kindergarten in the fall. His test scores were very scattered; in some areas he excelled, but in many other areas, he did awful ("below average"). Now I knew, of course, that he probably wouldn't test well. He has a ZERO attention span if you try to make him do things he doesn't want to do or think about. But I have to say, that going over those results was truly heartwrenching for me. Imagine looking at all the "below average" scores, knowing that it's YOUR kid's results. Not good. Not good at all. So we had the meeting and came out of it having no better of an idea about what his placement would be than we did going into it. As anybody who reads this blog knows, I've had it with the IU - I just want to be done with them, not just for my benefit, but for Sean's as well. And if I had an idea about anything after our meeting with the team, it was that we would definitely have to work with the IU again in the fall, and I just was not interested in that - at all.

So, thanks to a complete God send of an opportunity (which is for a different blog entirely!) we put our house up on the market and sold it quickly, and are moving over to Newtown. We're all signed up with the Council Rock school district, who houses all its special ed students and has no affiliation with the IU at all. That works for me. CR is a great district and I'm hoping that all kids, Sean especially, excels under their guidance. Time will tell...

Getting Ready for Kindergarten

The past few weeks have been busy with people coming out to Tawanka to evaluate Sean's skills for his kindergarten placement. At Sean's IEP meeting in the beginning of December, when transition was mentioned, I had absolutely no intentions of doing so. But as time dragged on, and we kept on waiting and waiting for the Chat (which only arrived last week), and for our new speech therapist to begin working with Sean, and for our reimbursement paperwork to arrive in the mail (came yesterday), I came to the realization that I absolutely could not put Sean (or myself) through another year with the IU. When I step back and take an honest look at my son, I know he probably can't be mainstreamed yet. His biggest issues are his lack of language and his short attention span. But that doesn't mean he can't do kindergarten work. I have been working with him on writing his name, drawing shapes, and using scissors. He is learning how to do all of it, and I'm confident that he'll have all those skills mastered by the time school starts in the fall. I'm going to make sure of it. He is so smart, I just cannot bring myself to hold him back another year. He needs to be around typical kids next year, I'm not sure how they're going to accomodate us, but that's one thing Sean absolutely must have to continue developing socially at this point.

We've got a great summer planned for all the kids, Sean especially, I hope! Our family is lucky enough to know some really fantastic people and because of knowing some really fantastic people, we were given the opportunity to send Sean to "Expressions" day camp, which is a camp designed for high functioning kids on the spectrum who, like Sean, don't have a lot of language, and who need to work on their social skills. The camp is from 9-11:30, the van will pick Sean up and then take him to Tawanka for the 2nd half of the day. He will only go to camp while the IU is in session, which is 4 weeks. The rest of the time he'll be at home with me, but I will be working on skills then too. My other 3 kids go to camps on the same campus as Sean, so it will be so neat for me to be able to drop ALL my kids off in the same place for once (right now I have 4 kids in 3 different schools).

In August, we are going to Disney World! Our family is going, along with my husband's sister's family, and my in-law's. That's 7 kids, and 6 adults. We rented a 5 bedroom vacation home just outside the park, and we are all really looking forward to it! I can't wait to see how Sean does. And it will be great for the other kids to get away! I still remember feeling, a few short years ago, that we would never be able to take Sean anywhere ever again. So to have most of our freedom back is the best reward for all the work we're putting in to getting Sean better.

I'm trying to keep Sean off of the computer for longer periods of time while at home, and last week I gave him crayons and asked him to draw me a rainbow - he did it! The colors were in the correct order and it brought tears to my eyes! Without doing it intentionally, I underestimate how much information is in that big head of his, and it really made me feel guilty when he handed me that rainbow on paper.

We are also working on sounds. Sean has been able to make the "s" sound several times for me. I tried teaching the sound by having him make the "t" sound, over and over at first, and then holding the sound for a few seconds at a time. That really helped him to get it and he is now beginning to say it more consistently.

It all just takes time, and usually lots of it, which drives me crazy, because I am not a patient person. But we keep making progress, and that's all you can really ask for.

Sean is off the Valtrex, for now, not sure if I'm going to start it up again. We are also taking a break from chelation and some supplements. It's good to give Sean's body a break every once in a while.

I'll give the next update sooon!

An Entry Regarding Lily, our North Star "Assistance Dog"! - I could go on forever about this topic, I swear!

It seems that interest in acquiring a service dog for a child with autism has really skyrocketed after some national media attention in the past 6 or so months from shows like "Good Morning America", which have featured kids on the spectrum and their trusted "service" pooches. Who doesn't think this is a great idea? I sure do! North Star Foundation's "Lola" (our Lily's sister) was featured on GMA last April. In fact, I guess you would consider us a "North Star family", since we are the proud owners of one of Patty's (the breeder/director of the North Star Foundation) "service" dogs, and have been since September of 2007.

When I first came up with the idea of Sean having a dog, his very own special friend, I was obsessed with finding out as much information as I could about this form of therapy for a kid with ASD. I remember googling "service dogs and autism" and there it was: for me, I think it was also covered in blinking, pink neon lights, "North Star Foundation", "We Help Children Find Their Way". I mean hello? This is exactly what I was looking for - somebody to help us help Sean find his way! I read the entire website in no time flat and was hooked on this place. It appealed to me because the price was right ($2,500 was a STEAL compared to the $10,000 price tags I had seen elsewhere), the dogs were absolutely GORGEOUS, and the website is so well written, that I thought this woman for sure is an expert in this field. I trusted her almost immediately.

After talking it over with my husband and the other kids, we decided to send in the application. After reading our information over, Patty told me we would be accepted onto her waiting list, which was 2 years, because we seemed to have realistic expectations of how one of her dogs could help Sean. I guess some people want a babysitter for their kid, or Lassie. Hell, I just wanted a dog to be Sean's friend, and to help interrupt Sean's stims, as advertised on the website.

I had made my first inquiry into acquiring a North Star dog in October of 2006, the litter was born April 20th, 2007, and we visited the pups on Memorial Day weekend, when they were all about 10 weeks old. Patty got to meet Sean, and therefore was able to better ascertain which pup would make the best match for him and his specific needs. When Sean didn't respond to the puppies, we should have paid more attention to that red flag, but we just assumed it was too damn hot outside for him to care about the dogs.

Lucky for us, the wait was not 2 years at all, or even close to that, it was only 9 months from inquiry to acquisition of the dog. I think originally Patty really liked me, and admired my enthusiasm in helping my child. I've always gone after things full speed ahead, and this was certainly no exception. We also had 4 children in common; I think that helped a lot too.

As much as I dislike Patty Dobbs Gross on a personal level, I am going to TRY to stay on point about the relevant issues concerning the placement of this dog within our family (much of the negative stuff regarding what I have in writing from her I'm going to leave out altogether b/c it's just too much to write about).

So here we go: Our selected pup went to a local puppy raiser in July for approximately 2 months before coming to live with us permanently. Although the dog had had some training, she was still a puppy in every sense when we got her. I taught her to not bark, to not jump, to not hang around the table during meal times. With the help of Valerie, our trainer, who Patty hooked us up with, I did a pretty damn good job of training this dog! Lily was housebroken when we got her, though I (and the puppy raiser) did notice the dog was leaking urine while sleeping, which turned out to be the reason our relationship with North Star went south.

Lily leaked urine, for reasons we still don't know to this day, and is prone to urinary tract infections. Unfortunately, when I told Patty about it, she wasn't quite sure how to respond, and wasn't sure the problem wasn't somehow connected to us and our care of the dog (she had suggested we weren't letting her out enough, or we were giving her too much water). I obviously found this statement to be insulting and ultimately ended the relationship. But before doing so, in a last ditch effort to get the testing the dog needed through the advice of my vet, my husband drove Lily up to Patty's place last July 4th weekend (that's right, a full 6 months from the time I had first approached her with the leaking canundrum) for more invasive and expensive testing that we simply could not afford. I have, in writing, Patty's agreement to "get to the bottom" of Lily's leaking issues (which got horribly worse during a UTI), if not through her vet, then through Tuft's. Needless to say, Patty did not go to Tuft's. I spoke with the vet who saw Lily and she let me know that Patty declined further testing past the initial first step of taking a urine sample from within the bladder to check for infection, which she thought may be resistant to the antibiotic we had repeatedly been treating her with (which ended up NOT being the issue). And we'll never know the cause, because Patty claimed the dog never leaked at all while in her care and that the problem must be on our end. We were so extremely disgusted, words cannot express our disgust, so Mike made the 4-5 hour trip back after 5 wasted days in CT, and picked Lily up. I sent some final thoughts to Patty and that was that! I will keep her emails until the day I die though, just in case she ever reads this and tries to deny what happened. I've got it all in writing.

The bottom line is this: dogs and MOST kids bond naturally...they don't need fancy websites, or special "training" (I use that word loosely in our case - there was no training for our dog & son team) to impact the life of a child with special needs. That child naturally takes to that dog, and loves it and shows it empathy although that child has never shown another human being any kind of empathy whatsoever during his/her lifetime. You don't need to spend thousands of dollars to see the changes a dog can bring to the life of a child on the spectrum.

With that being said, let me also say that of course some kids' lives have been dramatically improved with the help of a properly trained dog, specific to that child's needs. 4 Paws for Ability has a great reputation for this exact purpose, among others who are not popping into my head at this moment. But what Patty sold us, and most other North Star families, is the natural connection between child and dog; a dog who naturally improves a child's life.

We received our North Star "public access" vest after completing the "good citizenship" test. Lily was in no way ready for public access after passing this test by the skin of her teeth (by an extremely lenient test giver). North Star paid for a repeat course, but after that, there was silence. No game plan, no nothing on where to go next (not to mention a chronically infected, leaky dog hampered our plans to take her out in public, but Patty would not acknowledge this). Plus there was so much tension between me and Patty you could cut it with a knife, even from PA to CT. Things were getting ugly!

I keep in touch with some of Lily's littermates' families who have the same opinion of North Star as I do: they would NEVER recommend it to anybody; they don't like Patty or her lack of professionalism, and their dogs are nothing more than expensive family pets, who in no way whatsoever, have helped their disabled children. Their experience, and mine, are the main reason I wanted to start a blog on Sean and his progress. I have also come across puppy raisers for Patty who would never do business with her again due to the nervousness of her dogs, a fact which Patty admitted to my husband about OUR litter - which begs the question: How many nervous dogs has she bred?? She verbally admitted to my husband she would never repeat Lily's breeding.

There are also some families who have had a great experience with North Star. I also keep in touch with one such family. But I happen to think that their son naturally bonded with his dog, the current success of the placement has absolutely nothing to do with any specific North Star training, I think even the mother of this child would admit that at this point. But maybe some families get lucky with experienced trainers who are familiar with autism and dogs.

Sean never took to Lily, a fact I would never blame Patty for. I just want parents to realize that not all kids will take to their dog, and a reputable organization will make sure the placement is successful before taking your money. Patty is all over the internet, speaking intellectually about autism, and a well trained dog's role in an autistic child's life. She is so convincing; I liked her so much, until the problems with Lily set in and she seemed completely aloof to our problems and began talking to me like I was uneducated about raising and caring for dogs (meanwhile I had 2 Shelties (females) during my lifetime, neither had the issues we were dealing with now).

If your child likes dogs, find a reputable breeder of Goldens, or another kid friendly breed, and go that route! If you can get a trainer who has experience with service dogs (or is highly motivated to learn about it), especially pertaining to kids with autism, you're in good shape. By the time you get a fully trained dog to meet your child's needs, you'll have spent less than you would have paid to Patty in a "donation" anyway!

When we acquired Lily, a contract with North Star was nonexistent, and therefore, we had no protections afforded to us. When the leaking finally got noticed, and the "recessed vulva" was diagnosed, Patty did not offer to replace Lily (not that we would have taken her up on that), nor did she offer us any kind of help. Reimbursements made by her were like pulling teeth.

So just be careful! I don't begrudge people who have successful placements through North Star, or any other organization. I just want people to know, minus many of the details, that we are one family of probably many, who having done business with Patty, have ended up unhappy with our investment. As most families of autistic children already know, therapy is expensive, and we try to choose wisely among what is available. Money doesn't grow on trees, and I feel my family got screwed. The price tag for Lily was $2,500 - did we pay full cost? No. Thank you God! But many families do pay out of their own pocket. Some of the dogs from Lily's litter cost $5,000. That is flat out wrong! For the services we received, that is robbery.

This is the best therapy I could have asked for: writing about our experience in a blog takes the weight of the entire experience off my shoulders. Lily is now medicated, (something that Patty advised against), and has been dry ever since. We also give her cranberry capsules to help keep the UTI's away, and it has done its job. She hasn't had an infection in months (since we brought her back from Patty's).

We only wanted an apology for all the dirty floors and carpets, and stress, but never received one; only blame for the problem! Instead of getting a dog to help our special needs son, we also got a special needs dog! Figures! Choose your organization wisely people, that's all I can say! And good luck to anybody on that journey. I hope a service dog (or just a pet) will help your child! Good luck!

Where We're At Right Now...

Okay, so today is Sunday, January 18th. My husband Mike is anxiously watching the Eagles/Cardinals game. I don't have my hopes up too high because I've lived in Philadelphia long enough to know that we are not privy to winning championships! Yes, we did win the World Series after 25 years - go Phillies!

Now on to the latest developments with Sean: we started him on Valtrex (anti-viral therapy) 2 weeks ago. In the beginning, we saw absolutely no difference. But Sean was only getting half the prescribed dose. Once we had a few days under our belt of 1/2 the dose, we started the full dose and WOW!! Right away the craziness hit. When I tell you our boy was out of control, I mean he was OUT OF CONTROL!! He was spinning himself into oblivion, running his hands across his eyes, just like old times, hyperactive, annoying as hell. COMPLETELY AUTISTIC. We are experiencing a MAJOR regression. From what I've read on Stan Kurtz's Yahoo Group, this is a good sign, meaning that Sean is a responder to this anti-viral therapy. His "healing regression" could last up to 30 days. I certainly hope so (that Sean is a responder, not that this regression will last for 30 days). Today I sat down with him to do some activities in his Pre-K Curriculum workbook and he actually was able to write "e" on the worksheet, like the directions required. Amazing!!! People can say what they want about "alternative" treatments, but they seem to be working in Sean's case. I would hate to be one of those parents out there who didn't want to try this route and are now reading my story saying "Oh shit, maybe there's something to this biomed thing..."

Also, we got the results back from the last provocation test and the lead was CUT IN HALF!!! How 'bout that?! We'll do one more test before we see Dr. Stu again to find out where we go next. We've definitely seen great results since starting treatment with Stockton Family Practice.

We are also in the midst of putting together a beef and beer for Sean to help defray the cost of all his treatments. I'll keep you updated! Thanks to everybody for their support!

The IEP Outcome

On December 11th, a miserably rainy day, not to mention a bad hair day, Mike and I drove up to our 2nd IEP meeting in 2 months at Tawanka. I really thought that I would be nervous about it, but quite the contrary, I felt composed and I knew that I had data to back up my claims. My boy had been thriving under private therapy - and not just speech, but through appropriate medical care due to vaccine injury also. It seems like a lot of people in the IU either don't understand what that's all about or just flat out don't care. But whatever, I don't spend a lot of time caring about what the people in charge who have "normal" kids think about people like me or how I choose to treat my child.

So with that said, our meeting proceeded without incident. Although the ball had been dropped with regard to Sean not having an augmentative communication device since he had left his first preschool program over a year before, we heard no apology. We were told that things would be set in motion and that we would get the appropriate help for Sean and his communication needs. I said that Sean was learning to speak with private speech, and they agreed to give him one on one speech with a new speech therapist (not our private therapist, but one employed with the IU). They increased his time from 30 minutes/week of group therapy to 60 mins/week of one on one therapy with the new therapist (refer back to previous post as to why the original therapist was replaced). Sean was also given an additional 30 minutes/week with an additional therapist (who has experience with programming and implementing augmentative communication devices) to help get him going with his Chat PC.

Nothing has been implemented yet. It seems that some paperwork took longer than expected to complete and we should be receiving the NOREP and IEP to sign in the next couple of days. I can't comment on the outcome of this revised plan since it has yet to be put into action.

I'm finding that it's best to be careful (especially since people at the IU know I write this blog every once in a blue moon!) about who I name and what exactly I say about them. I would just like to say for now that I appreciate the olive branch that was extended to me via email today.

To give an update on Sean, he had a great Christmas! He opened all of his gifts, with interest might I add. He seems to show more and more curiosity with each passing birthday and Christmas. It's very encouraging to see. Santa brought him some really great board games and a keyboard - he loves the keyboard. His teacher told me that he enjoyed playing it in the classroom, so we figured, why not? We now have a guitar, drum, and a keyboard, with working microphone. Annie, our 3 year old, LOVES playing all of them. She's definitely got a future in showbiz, God help us. Sean has been enjoying singing into the microphone too. It's been a lot of fun to watch him check everything out. He has a curiosity that wasn't there 2 years ago.

Chelation is still going well. He missed a couple of weeks since December, the first time that has ever happened! But I don't get upset about it, I've been taking him religiously since July, and now we're back on track with things settling back into the normal routine. We get new provocation results back next week regarding lead levels in his urine. I'll update that as soon as I get them back. We're working on using scissors, working in pre-k workbooks, drawing shapes, everything we can think of to help get Sean ready for kindergarten.

We are also continuing with almost daily MB12 shots in the butt, we started Valtrex about 2 weeks ago, results seem minimal, and we stopped Monolaurin again since we're using another anti-viral. I'm disappointed, but not discouraged.

Mike and I both have the utmost confidence in our son that he can do anything he's taught. He's really that smart. I wish there was a faster way around this language barrier, but I'm afraid there isn't. We just have to keep plugging away and hoping that he'll continue to come around. As long as we get him to his highest potential, that's all we care about. After all, we love him no matter what, and no amount of progress, or lack there of, could ever change that. We're really proud of how far he's come.

Happy 2009 from the Sypek family! We're looking ahead to another great year of progress and health. I hope to blog much more in the coming year. I still haven't written about Lily, our North Star "assistance" dog, or all the great families I've met through that failed endeavor. I'll get around to it eventually!!

"Like Sands through the hourglass, so are the Days of our Lives"...

What a dramatic month November has been, in more ways that one! Remember the Palm Chat I was complaining about not having in a timely manner for Sean in my last blog entry? Got it. We still need to have a meeting about how to implement its use, but I know they're working on that. Over at our beloved Intermediate Unit, there are apparently "web trollers" who google news about the establishment and then pass that information on to the appropriate party. How 'bout that? Luckily for me, my blog came up in a search, its existence was told to Sean's teacher, who in turn, asked me if she could have the web address because she "heard" I had a blog. So I happily obliged her, not knowing that I apparently had written some things a certain therapist of my son's would find offensive. I debated for a while on whether or not to even write about this, but ultimately decided that IT'S MY BLOG!!! If you don't like what I write, THEN DON'T READ IT!!! I don't blame anybody specifically for Sean's Chat not getting to us in a timely manner. So I'm still baffled by this woman's over reaction to it. I wish she had gotten as angry with the IU's awful and ineffective SETT process as she was with me for writing in my blog that I was still waiting for a Chat! When I saw her while picking up Sean from school (to take him to his private speech), she couldn't wait to get in my face and be confrontational. Very professional, indeed! Needless to say, she's done working with my kid. I called the Supervisor for Childhood Services and let him know how badly I felt I was treated and after a lot of back and forth, we finally have an IEP meeting set up for December 11th. He was very nice and I told him that, depending on how this all works out, I would blog very nice things about him, if he comes through for me.

You know, if people want to waste MY time (like the Kirby salesman that comes to my door to sell me a vacuum I already own - ugh, they are BRUTAL), that's one thing. But when people are wasting my kid's precious time, and then get pissed at ME because I've found a person who's better equipped to help him, that tells me everything I need to know about that person and I don't want your "therapy"! I won't deal with somebody like that, and I think most moms with special needs kids are gonna back me up on that fact. It's just amazing how some people can't help but think of themselves first. They get their feelings hurt and that's all that matters then - not your kid or your kid's needs. Truly amazing.

I know what I want for Sean at this upcoming meeting, because I now know what works for him, and what is "appropriate", in terms of him learning language, and I'm going to ask for it. I'm not going to take their "recommendations". I know what works for my kid, so don't try telling me that you do. We've tried their recommendations and gotten a little beyond nowhere on expressive language/communication for going on 3 years now. Done with that. Let's now try my recommendations, okay?

I would like to end this on a positive note. While, for my own mental health, I needed to get that rant off my chest, I truly enjoy the people that work with Sean everyday in school, except now for that one sour grape, who is no longer working with him. My little guy continues to make gains within his current classroom setting, and I am so happy we moved him there last year. These people are exceptional, and I admire them so much. I know their pay must suck, so for them to be there teaching and caring for these kids the way that they do on a daily basis, well, they're obviously there for the kids, not the paycheck. It's pathetic that we pay athletes (many of whom use performance enhancers and are HORRIBLE role models - Michael Vick anyone?) millions of dollars. Yet we pay Sean's team of great people crap. That is the greatest injustice I can think of, next to abortion.

Sean, by the way, is still making great progress. I met with Kim at Dr. Stu's office last week and we came up with a plan of action. I began daily MB12 shots last week. Then I'm going to begin using Ribose and NADH (substances made naturally by the body with a variety of functions, but mainly help to improve energy - how this helps Sean's autism is way over my head, but who cares? It won't hurt him, and in fact, may help him - a lot) one at a time, a week at a time. If I don't get results with those things, I will move on to Valtrex. It's an oblong shaped, blue pill. I would have to wipe the blue coating off (doctor's orders - it's got lead in it I think he said), and then crush it up and put it in Sean's juice. That just sounds like a huge pain in my ass, so I'm obviously going to save that for last. We'll see what happens with the other approaches first. The shots seem to keep Sean more grounded. He doesn't seem as spacey to me. He responds better to our interactions with him. All in all, it's been a good thing, in my opinion. Though Sean would probably NOT agree with me since he's the one getting the shot in his ass on a daily basis! He's tough though and doesn't complain. He's a brave little boy and puts up with a lot of shit.

So I guess that's it for now. I'll post about the NADH and Ribose after we've tried them. I am looking forward to the break this week brings from making 4 school lunches in the mornings and running around trying to be on time for appointments and preschool lunch pick ups. I have 4 really terrific kids, and I'm going to take the time this week to enjoy each and every one of them, and to be thankful for all the joy they give to me every day of my life (I'll have to remember that the next time I'm yelling at one of them for something!)

Speaking in Sentences

It's been a couple of weeks since I've written and I'm actually glad because it gives me time to look at my last post and see how much more progress we've made! Sean is still saying "Mom", though sometimes, like now, because he's congested, he's calling me "Bomb". Or maybe that's just Sean's way of trying to call me a bad word when he's frustrated with me! Though Mike's serene nature seems to dominate Sean's persona, there is a little bit of a temper that flares up when he gets angry, which surely comes from my side of the gene pool.

Sean is now making requests in complete sentences. For example, "Mom, I want a(n) applebar." or "Mom, I want the tom pu ta (computer)". These are extraordinary steps that our little guy has taken in such a short period of time. It's almost overwhelming at times to hear him speak. This morning after waking up and coming into our room, Sean pointed to the bathroom and said, "bathroom". Now please understand and keep in mind that Sean's speech is brand new and sounds it in some regards. Many of his words have become EXCELLENT approximations that other people are now beginning to understand. This is simply amazing, and we have real hope, for the first time, that our little guy will learn to speak. He's doing it already!

Sean is supposed to have a programmed hand held augmentative communication device sent home from school, but we are still waiting. I'm not sure for what. Our IEP was over a month ago and there's been no word on its whereabouts. I think I would probably be way more upset about the wait if it wasn't for the explosion in speech that we're currently seeing. But since I have my own way of helping Sean because I am present at his sessions with Jen so I can emulate what she's doing at home, I'm not worked up about it - yet. The flow of therapy from office to home has been so important to his progress.

We still are going to try Valtrex with Sean. I think we may see some good results from that. But we won't know anything until we give it a try. Hopefully insurance will cover it. Wait, did I just say that? Insurance? Cover something pertaining to Sean's autism? I'm laughing so hard I'm almost crying right now. No wait, they do pay for CVS brand Pull Ups. I can't complain about that.

Also, I wanted to mention Halloween. Sean was a cowboy! I didn't buy him a cowboy hat, only the horse that gets strapped onto the poor victim who's got to wear it. He was excellent! He even kept the hat on that the girls gave to him in the classroom. Since I came up to Tawanka for all the spooky festivities, I got to see the kids in action for this event. They all did a terrific job with trick or treating to the other classrooms and in participating in the day's events. I loved playing with them, most were very responsive to my attempts at engaging them in the organized activities that were set up. It takes a lot of energy to deal with even one autistic child, let alone a classroom full. These teachers, aides, and therapists deserve so much more money in their paycheck! Whatever they make, it's not nearly enough for the work they are required to do throughout their day in caring for our kids with extra needs. So thank you! I know that Sean is very happy at school, and that means so much to us.

The following day, Saturday, all the kids were out playing on our court. Sean actually went outside to be with everybody. It was really neat to see him show interest in being with the other kids. They were so sweet in interacting with him, and he seemed like he was taking it all in and learning from them. Of course we still have a long way to go in getting Sean to do all things "typical", but we're crossing things off the list like crazy right now at lightning speed with no signs of slowing up. It's a very exciting time for us and for Sean. He can now use language to express himself instead of having to point or pull us or use a picture. Can any of us imagine how that must feel for him? His self esteem must be going through the roof!

Will give more updates as I have them. By the way, Sean is still using the toilet everytime he needs to go. We've had zero accidents. I am one of the happiest moms in the world!! Go Sean!!!

Sean learned how to say "Mom" today!

Any mom of a non-verbal autistic child knows what music to the ears this solitary word is. It was the real thing, not an approximation, but just beautifully stated while handing me a colored chip for the bingo game we were playing during our session. His speech therapist has been great for him. She has really helped Sean learn how to use his mouth for functional speech. I keep asking him to say it over and over - and he is gladly obliging me. What a kid! I have 5 years worth of hearing my name from him to make up for. Oh, the things mothers of typical kids take for granted - the things I take for granted from my own 3 other healthy kiddos.

We had a really great day today. Despite the fact that Sean started our day out at 5 am, he has had one of his best days yet. He told me this morning, "poopy", and so off to the bathroom we went where he was true to his word! He needed to go again about a half hour later, telling me "poopy" again and taking my hand. We are really taking giant steps forward to say the least. What a HUGE difference!

At this point, we are just soaking it all in and enjoying seeing all these changes FINALLY occuring at such a rapid pace.

We're Back on Track!!

Wow, what a difference a few days can make! Sean is now independently pooping on the potty. When I say independently, I really mean it. Take this morning for example, I was upstairs putting make up on, and by the time I can back downstairs, there he was, standing in the bathroom, pants pulled back up, toilet paper roll emptied, toilet flushed...

But not only that, today, for the first time ever, Sean could blow his nose in a tissue! How great is that?!?! We're still not sure what caused the progression in skills. The Monolaurin or the lack of multiple cookies?? I think it's the Monolaurin.

Either way, we are seeing great strides in Sean's behavior. He's also saying more words, and sounds. He pointed to some Halloween decorations in our house and labeled them appropriately with the word, "bat". It is so cool to hear him say that! And he looks right at me while saying it, so it's not just a random word.


I will give more updates as they happen.

We're Definitely on to Something Here!

Today we had fabulous success! Sean independently went to the bathroom and pooped!! I was upstairs putting clothes away or something and I heard the bathroom light go on. Annie was asleep so I knew it was Sean in there. I gave him a minute to himself before heading downstairs to see what he was doing in there. When I opened the door, there he was, standing up with toilet paper in hand, ready for me to wipe him. I looked into the toilet, and there it was, a healthy looking load at the bottom of the bowl. His Pull Up was on the floor and completely clean. Whoo hooooo!

This was not our first success story with getting Sean back into pooping mode though. He told me "poopy" yesterday while grabbing at his butt, so off we went to the bathroom where he pooped for me. I was so encouraged by his consistent pooping efforts that I grabbed him a fresh pair of undies and put them on, figuring he'd be glad to have comfortable, breathable boxers for a change. Yeah, well, less than 5 minutes later he dropped a sludge bomb in them and so he was back in Pull Ups.

So what we've been doing since last Thursday is cutting out the cookies from his diet - they're completely off limits for now, just to give his system a break. Sean had HORRIBLE smelling gas. It was embarrassing to take him out in public places. Mike and I both felt that the cookies had a lot to do with it. Also, we took the supplement L-Carnitine out of his daily regimen. It made him smell like fish - it seeped out of every pore of his body, he breathed it out, he peed it out. It just became too much. It was becoming harder and harder to be around our own son. He stunk! The gas and the fish smell are no longer an issue. The last thing we did was reintroduce a supplement called Monolaurin, a coconut extract, which works as an anti-viral. The first day we started the Monolaurin back up was the first day that Sean pooped on the toilet for us. When we first started giving Sean this particular supplement, he did not potty train right away for us. But it was an important first step to get to that goal. Monolaurin really helps bind up Sean's bowels, sending a more obvious signal when he needs to go! When we took him off of it, we didn't realize how sludgy Sean's poop had become again, so this is something we're going to stick with. Treatments for autism are very complicated, and sometimes you don't realize how something is affecting your kid unless you're very organized and document everything, or until you begin removing things and adding other things, which can help you to figure it all out. Once Sean is consistently using the toilet again, we'll see about adding cookies back in, one brand at a time.

I am so happy that we seem to have found the problem, or we're at least looking in the right places. If the Monolaurin continues to bring us success with Sean, we're going to look into starting Valtrex, which is a prescription medication for the herpes virus, which seems to be a successful mode of treatment for some kids on the spectrum. Apparently, some of our kids are suffering from an underlying virus, which is screwing up the body's ability to detox and function normally. Is it the vaccines that weaken the immune system and allow the viruses to take over? Who knows for sure right now. But I believe we'll find out eventually. And that's when our kids will stop getting autism.

And in other news, Sean is doing great with his speech. We are actually starting to understand what he's saying to us. How cool is that? And he's beginning to use his speech more and more for things that he wants and needs. He has also begun interacting very nicely with Annie. Yesterday, even though I had to ask him to do it, he tickled her. That was the first time he's ever done that. So we've got a lot going on. We're still chelating and doing iv glutathione pushes once per week, speech twice a week, and school the rest of the time.

Recovering your kid is really hard work. People that don't have autistic kids couldn't understand how much goes into this kind of a life. But it is so worth it! Sean is doing things that he wouldn't be doing yet, if ever, without this type of intervention. I love working with him and seeing him answer questions for me that I didn't know he could answer yet. That's when you say to yourself, "it's working!". He absorbs more at school because he feels better and can relate to everyone and everything better. That's all the proof I need that biomedical is the way to go!

Some Thoughts on the Election

Mike sent me a great article today about Sarah Palin and her attacks on Barack Obama regarding his abortion record. Everyone who knows me knows I am passionately pro-life, in every case. Good can never come out of a situation in which we kill an unborn child. I cannot even believe our great country offers abortion as a legal alternative to motherhood. Anyway, I am totally justified in saying this, as I was faced with an unplanned pregnancy, and an ex-boyfriend, at 20 years old. I chose life, not because it was easy, or the right time, but because it was the right thing to do. There simply was no other option. For me, there is only black and white on this issue.

Since it's looking more and more like Obama is going to win the White House on November 4th, I'm wondering where the hell the special needs community is? Sarah Palin is living what we live every day. She had the guts to do the right thing by her child Trig, and gave him life. She would be an incredible advocate for us in Washington! What is wrong with this country? We are putting our pocket books ahead of our morals in this election! Barack Obama doesn't give a damn about our special needs kids, for God's sake. If he's okay with NOT INTERVENING after a baby survives a botched abortion, then what makes you think he's going to do a thing to help our community? If we can legally kill our unwanted babies at all stages of gestation, up to and including the due date, then how long will it be until we can start terminating our special needs children when they become too much of a burden on us as parents? Does that sound crazy to you? It shouldn't. It's coming down the pike.

McCain and Palin have met with special needs families after rallies. I haven't heard about Obama and Biden doing anything like that. I just cannot believe people don't educate themselves on all the issues. They'll vote for Obama because he seems "nice", and he's young, and black, and his family is so cute. If that's what you base your vote on, then please, stay home. You are obliged, as an American citizen, to be educated and informed before stepping in that voting booth.

I'm just amazed at how many parents that blame the government in the first place, for letting big pharma get away with poisoning our kids with polluted vaccinations, will turn around and vote for this guy. Just ask the parents living over in Jersey how happy they are with the revised mandated vaccine schedule for their kids. They are ramming shots down those poor kids throats. Parents have less and less of a say. Jersey makes it very difficult to opt out. Very scary. But yes, let's elect Barack Obama, Corzine's fellow Democrat. They seem to be so friendly to the autism community!! Here's the link. You can read all about it.

http://politics.healthdiaries.com/new-jersey-makes-flu-shots-mandatory-for-preschoolers.html

At the end of the day, I guess our special needs community feels more strongly about paying less at the pump, and shitty government health care for all because you know, the government is so good at everything it takes control of, right? We'll see how this all turns out soon enough. Unfortunately, I believe we're about to make a huge mistake by electing the wrong guy for President to represent our kids. And our kids are going to continue paying the price for government's mistakes. They are the ones who will end up being the biggest losers in this election.

The Poop Update & the IEP

Well, I was hoping for a better update than what I have to offer right now - we've still got deliberate pooping in the pants going on - with occasional successes in the toilet. I picked up a bottle of "Tri Salts" on the advice of nurse Kim Hamada from Dr. Freedenfeld's office. They are supposed to help rid the body of any lingering gluten. I'm not sure if it will work or not, because I've been forgetting to add it to his juice. When I added it to his juice last week, he refused to drink it. Maybe it was too much in one cup, I don't know. I'll have to add it in smaller amounts and see what happens. So that's that...

Mike and I went to Sean's IEP last week and it went as expected. I want them to pay for private speech, and they don't want to put out an extra nickel unless forced to do so. What a crappy organization the Bucks County Intermediate Unit is! I'm not talking about the teachers and the therapists, but the organization itself. Their only objective is to give your child the basics, and nothing more! How do we get these kids functioning at a higher level with this kind of mediocre system in place? I know they are swamped with all the kids flooding into the system, but that's still not a good enough excuse for screwing all our kids. For instance, Sean has been receiving "small group" speech therapy for 2 going on 3 years now. Guess how much progress he's made in that kind of a setting? That's right - none. Since treating Sean with iv glutathione and chelation, he has finally begun making more sounds and has shown the ability to begin linking these sounds together in order to make words, thanks to Jennifer over at Yarley Speech & Language. I'm talking simple words like, "bat", and "daddy", and nice approximations for things like "my turn", "turtle", "that one", colors, numbers, and can even carry a tune, though you can't understand what the heck he's singing. I need Jennifer to see Sean for a few more weeks so she can write a really in depth, meaningful report about him so that I can call another IEP meeting and present to them her findings and diagnosis. Hopefully it will be enough, but I don't know. Families like ours are stressed out enough and then we have to deal with this kind of bullshit on top of it. Kinda makes you wonder if anybody BUT you really cares about your kid. Information about meaningful services is never freely given, but always a struggle to obtain.

Tomorrow we have our weekly chelation appointment. I always look forward to seeing all the great people that work in that office and treat Sean. It's a good thing to know that you're helping to remove filth from your child's body. I hope that in time, we will really start to see some promising results. It seems like we're always waiting on things - test results, changes in behaviors, meetings, dr. appts., etc.
I prayed for the virtue of patience and God gave me Sean - go figure. But for the record, I'm still working on it. I'm a LONG way from having "mastered" that skill!

Finding the Pieces of the Puzzle

Okay, so we were having smooth sailing (as smooth as it can be on the Sea of Autism) for about a month - we were having success with chelation, Sean was making strides - such as becoming fully potty trained. For parents with an autistic child, we all know what a HUMONGOUS deal this is! It's a huge milestone. I almost threw out the leftover Pull Ups, but decided not to just yet. Well, thank God for intuition because little did I know that just a few short weeks later, Sean would be back in them. Sigh...
I guess the most distressing part about it is that we don't know WHY Sean has reverted back to crapping in his pants. But I'm finding it very hard to deal with. It's a big loss, but hopefully one that can be overcome. We added casein back into his diet about the same time this toilet regression hit. Unfortunately, I also inadvertantly had added gluten back into Sean's diet as well. I saw "Wheat Free" on a package, and for some reason, for a couple of weeks, that translated in my brain as being "Gluten Free". I know, I know, there are other sources of gluten besides wheat. I've been doing this damn diet for a year now and should have been able to easily avoid such a stupid and careless mistake. So is the gluten infraction what caused the pooping in the pants? Or the casein? Hmmm....
Can't answer that yet since Sean hasn't pooped for 2 days. Stay tuned for an update.

He's Immune!!

I've been having a fair amount of anxiety regarding taking Sean to his 5 year check up at the pediatrician's office. They want to shoot him up with his boosters, despite the fact that he has ASD. Thankfully, I had his titers tested over at Dr. Freedenfeld's office and he's immune to measles, mumps, rubella, polio & varicella. So they can kiss my ass when they try to inject my boy with more shots that he doesn't need!
I am so happy that I can go into that appointment with the proof in my hands that we are over-vaccinating our children. Why can't we check all our children's titers before administering booster shots? It just doesn't make any sense the way we're immunizing in this country!

"Your Son Is Capable of Having Functional Speech"

That is exactly what Sean's new speech therapist told me at his evaluation last Monday. She comes highly recommended. Nobody has ever offered our family that kind of hope before. She works with a family member of mine, and with another little boy on the spectrum who lives on our street.We're just getting started down this road (speech therapy), but I'm hoping we have a smooth ride with only a few bumps. But like my grandmother would say, "Don't expect anything and you won't be disappointed". Not that I'm expecting nothing, that wouldn't be true, but we are careful not to expect too much. Watching how hard Sean was working during those sessions to make certain sounds, and to say what he was being asked to say - remember now that he's basically non-verbal - made me very emotional. I had to blink back some tears! My boy is so determined! I love his spirit. He's an amazing child. And as his parents, Mike and I can only return that determination in helping him recover - to the best of his ability. Kids recover from autism every day. Maybe someday that will be our boy too. But if not, we still love him the same as we always have, knowing that we really did try to the best of our ability to give him as many skills as possible for a more normal life.

"When is Sean Gonna Be Done with Autism?"

That's what my 6 year old daughter Emily asked me the other day. I think she is finally getting to the age where she's becoming frustrated with Sean's lack of communication & social skills and just wants to have her younger brother to play with. I was wishing I could answer her with a , "Next week honey, we'll get all the autism out and Sean will be healthy again." But instead I answered her with an "I don't know baby, I wish I had the answer to that, but I don't." Our children know that we are chelating Sean to remove lead and other neurotoxic metals from his brain, bones, organs and other soft tissues. They see the amount of supplements he has to drink in his juice and that he needs help with things that they can do with ease. We're very proud of Sean's accomplishments and how much he has overcome up to this point. The kids know their brother has a disability and they look out for him - even Annie, his 3 year old sister looks out for her big brother. If the front door has been mistakenly left unlocked and Sean goes out, Annie comes and gets me right away. We are so lucky our kids understand that we all have a role to play concerning Sean's safety and well-being.
For a couple of weeks there, Sean was completely potty trained and it was absolutely wonderful. Since last week, when we added casein and egg whites back into his diet, he has begun doing # 2's in his underwear. I just can't go back to that. It's too mentally draining. He's also been super spaced out since last week too. We'll give it to the end of this week, if he doesn't improve, then we'll remove the casein and egg white again. Keeping our fingers crossed that he can stay in underwear. Especially since I just bought him really cool, comfortable cotton boxers! I've never seen the impact of diet in our son this way. It's very interesting to see the differences (regression) in him.

Some Background on Sean

Ok, so here's our journey so far in a nutshell for anyone who's reading this blog and obviously somewhat interested. Sean was born perfectly healthy, we had no problems until his 2nd HepB vax. Sean became chronically congested from that point on. At only 8 weeks of age he received his first full round of immunizations: Prevnar, Hib, DTaP, and IPV. Looking back, I believe this is when Sean began to sink into the pit that is autism.
So after 18 months of chronic ear infections, no eye contact, no receptive or expressive language, no development of any social skills whatsoever, except for the tv, Sean had a love affair with the tv, we began to come out of our fog of denial.
We were referred to a neurodevelopmental pediatrician who gave us a PDD-NOS diagnosis, but nothing else. No help or hope of any kind. We left feeling pretty defeated that day. I think we did what most parents do - we started researching autism therapies online and looked into biomedical kind of skeptically. I thought it sounded like a load of crap and really wasn't interested in it at the time. So after a year of home therapy and then a year of autistic support preschool, and hardly any progress, we were getting desperate. This was around the same time Jenny McCarthy's book came out and she appeared on Oprah to talk about the biomedical approach and how it helped rescue her son from autism. I watched the entire show and couldn't buy her book fast enough. I immediately searched for a DAN! doctor in my area and made an appt. pronto. He was a homeopath and should never have been listed on the DAN! list but whatever, live and learn, right? We only stayed with him 6 months. He got Sean going on supplements and got him off gluten, which he's allergic to. We saw some progress, but it got to the point where we were telling him what we needed to do next in terms of treatments.
We went to the DAN! Conference in Cherry Hill, NJ this past April and were referred to Dr.Stu Freedenfeld, who treats autistic children. Our chief complaint when we first met with Dr. Freedenfeld was that Sean couldn't wear underwear because his diarrhea was so bad it leaked out of his Pull Up and down his legs.
Within 2 weeks from that first appointment, Sean was pooping out solid bm's. We were so excited! After some expensive pee tests, we found out Sean has way too much lead in his system so to get it out, we began using glutathione iv pushes once a week. Once we worked our way up to the max dose, we started with CA-EDTA chelation. Sean potty trained within a few days after starting that. Coincidence? I think not!
Don't get me wrong, we have a long road to travel, but we're in the right hands. We have a doctor who knows what he's going and has a fabulous reputation in the autism community. I don't know if we'll ever get Sean back to where he would have been before the autism set in, but I do know that as his parents, we're obligated to try to get him as close as we can to his fullest potential.
There are so many idiotic parents out there who call autism a blessing. How stupid is that? I'm sure their kids would agree that it's a blessing not fitting in at school, it's a blessing having the shits or being constipated every day, it's a blessing being so frustrated over not being able to communicate that these kids often injure themselves, or others, in desperation. Autism is a thief that steals children away from their families. And we're trying to find our little guy...

Latest Doctor Appointment

Okay, so we had an appointment on Tuesday, Sept. 2nd with Kim and Dr. Freedenfeld (he's over in Stockton, NJ and I highly recommend him) and it went fine. We're back on some supplements we had previously stopped giving Sean for a while - he really starts to stink. All the garbage that's in him starts coming out of his pores and his breath. Kind of gross. We're going to continue with the CA-EDTA chelation. It's pulling the lead, and that's a good thing. While giving Sean and his 3 year old sister Annie a bath tonight, I noticed that for the first time, Sean is really annoyed at his sister having any tub toys. He kept taking them off her. And it wasn't that he even wanted to play with the stuff, he just didn't want her to have any fun! If that's not typical 4 year old behavior, then I don't know what is!