"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!!!