Getting With the Program

So, finally had another meeting with the social worker in charge of helping us get Alex into an in-home program. The docs recommended we get Alex into a program last November. And after much hurrying up and waiting, we were told that in another week or so, we'll be on the waiting list. Wow. I'm so excited.

And incredibly pissed off. Everything I read, and everything "they" tell me is to get into the therapy early. All the calls I've made, and the organizing of people, getting this information to that person I've done for the last 10 months, is wasted time, basically. They can't even give us a time frame for the waiting list. I just feel sick.

So, taking the reins. I'll be on their waiting list, but I'm not waiting. We're going to put Alex into speech therapy in addition to what the school provides, (I have no idea what this will cost, insurance will pick up some of it, if we take him to Wausau for it) and we'll do whatever we can at home. At least one of my jobs went away last week, so I'll have a bit more time at home for Alex, which is what I've been wanting anyway.

On the brighter side, Brad reported that Alex said "doh" when he wanted to play with his play-doh, and has been making the "ff" noise when he wants french fries. He actually took Brad to McDonalds while they were in the mall, which means that his awareness is good, or that he has a really good memory, which we knew.

So, like most days, good and bad.

Good Days and Bad Days

All the bad days, when I can't predict anything that Alex will do, when he breaks things, when he cries for hours, when I'm at the end of my mommying rope, really don't carry any weight against the good days. When I can see what Alex is really like, or what he could be like. When he is so loving, and funny.

Of course, on the bad days, I can't even see the good days, and on the good days, I try to forget the bad ones. There really isn't much balance. But it seems like Alex has had more good days than bad lately.

This is my last week as an in-home parent educator. I'll miss it a lot, but I am really looking forward to having more time with Alex.

Working, working, working...

In the News

So, this guy was on "The Daily Show" the other night talking about thimerasol, not in one of their goofy interviews, but in the Stewart interview. He's written a book, and for the life of me I can't recall the name. It isn't the book I've been reading. Which raised the hair on my arms. I am pretty conflicted about it. I hate the fact that autism is affecting so many people that it deserves a place on "The Daily Show". And yet, if what the "mercury moms" are claiming is true, people need to know about it.

This has been everywhere for me lately. It is like you don't know if everyone has been talking about something, and you just are now aware of it, or it is just hitting the collective consciousness.

I don't want to be a crackpot, I have enough conspiracy theories. But I also want to do everything I can for Alex.

I'm still confused.

Whiny Post, best to ignore

It just isn't fair. Not that Alex has the autism, but that nothing is clear. I'm so torn between doing this cutting edge stuff that definitely hasn't been proven, and listening to conventional docs that have zero answers. How do you decide who to trust? It could very well be that desperate parents are lending credence to crackpot theories. Or it could be that conventional medicine is avoiding looking too closely at what could be a grave error on their part. Will we know more in a few years? Probably. Will waiting help Alex? Nope.

But I don't want to come at this from a desperate point of view. I want facts, and it doesn't seem like there are any. Some cases of autism can be traced to chromosomal triggers... Alex doesn't have that kind of autism. Is there a genetic component? There has to be, just looking at my family. But it can't only be genetic, can it? There are so many families where they have one autistic kid out of several, and even the genetics lab said I would only have a 5% chance of having another autistic child, according to their testing.

And it doesn't matter why, unless why can lead me to how to fix it. Don't we owe it to ourselves to figure out why the numbers have exploded? Even from a purely pragmatic point of view, all these autistic kids are costing the country boatloads of cash. And it doesn't seem to matter how good your insurance is... they don't cover it. And that is a whole other side to these "cutting-edge" theories. How much is too much to invest in an unproven theory? Part of me says that money is no object, but part of me wonders if there are people out there just trying to make cash off of our, my desperation.

Because I can see how Alex could be. How he should be. And I think sometimes that he is much better, and I don't know why, and other times I think he is worse, and I don't know why.

And all of us parents, we run around, searching for answers that aren't there, while we try to keep life going, we work, we take care of our kids, we try to make time for our friends, and we drop into bed at night and worry about the next day. My mind isn't clear. How can it be? Yet, I'm the one who is supposed to decide how to treat my son. The docs and therapists give suggestions, and then tell me to choose what therapy I think is best. Best being relative to what is available in your area. Oh, and they don't actually give you the information to compare. That's up to you too. And there are nutritional therapies, and megadoses of vitamins, and supplements, and chellation, and testing for allergies, and floortime, and God knows what else. And nothing is proven. And I feel frozen.

But what if I miss on the thing that works?

Eek!

I can't believe that I haven't posted in so long. In my defense, I've been pretty busy, but still.

Things are going pretty well with Alex. He is verbalizing more, and when he does, it's coming out pretty clear. It is still pretty random, and just because he says one thing on any given day, doesn't mean he'll repeat it. Which is difficult, because you have to teach the same lessons over and over. On the other hand, he seems to be doing more mimicking, which he has very rarely done.

A friend had her children over last night, and Alex seemed to really be aware of them. He joined each of them playing with toys, and was paying attention to how they were playing. I was thrilled with that, though I don't like to make a big deal in front of him, because he seems to back off when I do. It's also nice to be around kids who talk and play in a more regular sort of way. I forget what kids are supposed to be like, and although I know that Alex learns a lot in his early childhood classes, the kids there aren't "regular" (is there anyway to talk about kids being different without making them sound different? I feel like I'm making judgments about what is normal or different, and placing good/bad values on them, when I don't mean to. Alex has some amazing skills, but is so not regular, and most of the regular kids I know are nowhere near average. I must mean mainstream, which is icky too. Ugh.), and I think he sometimes picks up bad habits from them. So, I would really like to see him with other children more.

Marshfield Clinic finally gave us a diagnosis code, so with luck, we'll be able to get Alex some in-home therapy, which I'm hearing some good things about. More as I know more.

Am in the middle of reading "Evidence of Harm". If everything in this book is true, I'm not sure I want to be a part of this country anymore. I'm reserving judgment on the truth of the book, but it's leading me in a couple of new directions for therapies for Alex. I'll dedicate a full on rant about this when I'm done with the book.

So, that was a brief catch up. I'll try to post again soon.

J.