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!!