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!