Saturday, April 28, 2007

Backpedaling on the Previous Post

Okay, my last post sounded like the publisher had slipped me a little cash, but it was truly how I was feeling at the time. By the time I finished it, I was a bit disappointed there was no mention of valid non-ABA approaches, such as floortime and RDI. Although I should check the publication date, because I don't know what form they were in when she was writing.

I think I'm still in the "Somebody please tell me what to do" post-diagnosis flailing stage. I can see how people start plunking down a lot of money to consultants and doctors, because you feel like you need to do something FAST. When I read about DAN doctors, part of me thought, we've got to see one of those. When I read about RDI, I wanted to sign up (still true). The ABA thing I go back and forth on. Initially I was absolutely not interested, but now that I've been trying my own thing for almost a year, I wonder at times if it could be good for B. Not thirty hours a week, but maybe some kind of ABA-lite.

I'm trying (once again) to take a deep breath and look at the big picture. When I first figured out we were "on the spectrum", I knew the kind of approach I felt comfortable with. I started doing what I thought was best, basically some sensory integration, PECS symbols all around, sign language, and lots and lots of interaction. I still believe in what I'm doing, the root of my doubts is that I think B. needs more.

We are starting our private OT and speech in the next few months, and I think that might help me see which direction to head in. I've met the OT twice, and have a good feeling about her.

In any case, I still think that "Let Me Hear Your Voice" was a good read, as long as you also read a lot of other books along with it (and what parent of an autistic child doesn't?) Deep down I'm still a touchy-feely, floortme, RDI type parent who's trying to keep an open mind.

Thursday, April 26, 2007

Overcoming my prejudices

Lately I have been reading the book "Let Me Hear Your Voice", by Catherine Maurice. I'd heard of it many times, but avoided because I associated it with the words "Lovaas" and "recovery", both of which I have mixed feelings about.

I was immediately drawn in by her writing, and by the fact that she's not any sort of zealot (so far, but I haven't finished it yet), just a very hard-working and loving mom. Even though she gives so much credit to her ABA therapists, I think equal credit goes to her, and all her "incidental teaching". She sang songs and played and talked with her kids for hours every day.

I was particularly moved by the section of the book in which she realizes that her youngest child is also autistic. The huge effort she put into convincing herself that it wasn't true reminded me of myself almost a year ago. I remember staring at each twin thinking, "He just smiled at me, he can't be autistic"..."He is climbing up into my lap, so he can't be autistic" and so on.

It is a little hard to read this book and not think "If I hired enough people, and spent every second getting my boys to interact, could they also progress so fast?" G. is pretty easy to engage, and even seeks me out, but B. spends quite a bit of time doing his own thing. It's hard work to get him interested in things, and it might help if I hired a fresh face to work with him. While I think he should have times to relax and be himself, I also feel like I could use some help from somebody with experience interacting with kids like him.

As far as the concept of "recovery" goes, neither my husband nor I consider ourselves completely "normal", so we've never expected to have kids who were so. To fit into our family, it really benefits one to be, at the least, eccentric. But I do find Maurice's book encouraging, because her kids started out from a point a lot like mine. I feel re-energized, not necessarily to go out and set up an ABA program, but to believe that the songs we're singing and the goofy games we play are on the right track.

Movie Note: Finally saw Little Miss Sunshine, and loved it. I never cry in movies, and I cried all through this one, although officially it's a comedy, so that's a little odd.

Sunday, April 22, 2007

Something about the bathtub

My boys can all still fit in our large bathtub together. Once we add the plastic animals and the foam alphabet letters, it's gettting to be a close squeeze, but they can do it. The boys all manage to get along in there, even with J. lying down and flopping around in order to be the "big, white seal" (a favorite from our last aquarium visit).

The twins always perk up once they hit the water. In the living room they may have had the million-mile stare, especially if any music has been playing (I am in a quandary about playing CD's for them, because if they like the music they stop playing, interacting and sometimes stop moving at all, often for the duration of the CD) In the warm water of the tub, on the other hand, their faces brighten, they babble, they play with animals or splash around.

The best part comes after ten or fifteen minutes, when one or the other will come up to the edge of the tub, look right into my eyes and laugh with me. G. has even taken to giving me kisses. B. will grab on to my hair or my shirt, and just smile right at me.

Sunday, April 15, 2007

A Matter of Perspective

I took G. to church with me this morning, and left the other guys home with Dad. I teach Sunday School twice a month. Well, it's a Unitarian Universalist church, so I hardly feel that I can say I'm teaching Sunday School. It's pretty non-traditional, but it is on Sunday morning, and I am teaching, more or less.

Anyway, I dropped G. off in the toddler room. They only had three kids total, with two teachers, so the outlook was good. This particular teacher hadn't had G. in there before, because the twins stayed a few extra months in the infant room, until I decided to bite the bullet and admit that they really are two. So far, they haven't quite managed the whole hour in the toddler room. Sometimes they end up back in the infant room, and other times a woman who has a soft spot for them ends up carrying one around with her. Usually someone ends up coming to get me because one or the other is inconsolable after 40 minutes or so.

I heard some whining and complaining (in G's high-pitched "I'm not at all happy with this situation" little voice), but amazingly enough, no one came to get me for the entire hour.When I went to get G., the teacher seemed apologetic, and said, "I think he may be very tired. He alternated between wandering around the room and lying on the floor." I probably confused her, because I was so excited and grateful, and said, "You don't know how great this is. It's the first time he's stayed the whole hour in the toddler room!" I really felt we'd made some important progress. Eventually we can work on getting him up off the floor, but at least he's in the room, and I'm not!

Tuesday, April 10, 2007

Feeling Optimistic/ Autism vs. the Easter Bunny

This morning I woke up feeling optimistic about the whole situation. As far as I know, nothing in particular has changed (although G. did come back out of his no talking/no signing stage, which was, as always, a huge relief).

Anyway, I just have the feeling that things will be alright. I spoke to my "autism mom mentor" this past weekend, and she gave me a lot of encouragement. Her son was never as delayed as the twins are, but she thinks he was more distant and aloof. Now he's doing very well although of course he's still on the spectrum. Part of her advice to me was not to worry about money for the next year or two, and get all the therapy we possibly can. My husband is always more laid back about money than I am, so I'm lucky in that way. The last few days I've put a lot of my energy into sensory integration--learning about how to do the brushing protocol, and ordering a swing which we can hang in a doorway. Since we've put a little climbing structure in our backyard, B. has been so happy! He has stopped biting his hand, and I suspect it may be because he now has the outlet of climbing. I'd like to get him something to climb on inside, but right now he settles for hanging off the back of the couch. One of the reasons I love our current OT is that she gets so excited about B.'s climbing or even about his sitting on the arm of our rocking chair. She is always able to see strengths in him that I so need to hear about right now.

G. said his first three-syllable word today. It was "Tortoro", the name of a character in a Japanese children's movie that a friend gave us. It's funny, he'd only said two or three words all day (although he has been signing a lot), and then suddenly he was saying "Tortoro......Tortoro" very quietly.

Next week we have B's MRI. I'll stay home with the other two boys, and my husband will take him. I wish I could go, but we couldn't find anyone who could come over early enough to babysit. A few weeks later, G. will have his MRI, and we can both go to that one. I'm not expecting that there is anything wrong in their brains, but the devl. pediatrician said they have strangely-shaped heads. They were monoamniotic twins, meaning that their cords were tangled throughout the entire pregnancy, so things have been unusual from the beginning. For three weeks we believed that they were conjoined, and someday I plan to blog about that crazy period of our lives.

Oh, the second part of the title of this post refers to a comment we got recently. I didn't actually hear it. A friend of mine was with B. at a playspace when a man and his son joined them. The son really wanted to play with B., and B. was happily ignoring him. My friend mentioned that B. has autism, and the dad said, "Oh, I don't believe in any of that!", along with a few comments about everyone having a diagnosis these days, etc. When my friend told me, for some reason it struck me as funny (If an in-law of mine had said it, I'd be outraged.) It hadn't occurred to me that I could choose not to believe in autism. Is it like Santa Claus or the Easter Bunny? Even if that were true, I'd keep believing in it, because it helps me understand the odd, funny, loveable ways of my twins.

For some reason, this got me wondering about what Tom Cruise and Scientology think of autism. I'll have to Google it.

My new attitude about blogging is that I am going to try to stop being intimidated by the blogs which strike me as so well-written and wise and the type of thing which could actually be turned into a book someday. I feel my style is more of a stream-of-consciousness, sleep-deprived, I'm-trying-to-ignore-the Heffalump-sounds-coming-from-my-older-son's-room style. It does feel therapeutic to blog, and it's definitely very helpful to read other autism parents' blogs and comments.

Tuesday, April 3, 2007

A few notes

Today I mentioned to the director of the nursery school which the twins are signed up for next year that they've gotten their new diagnosis. I was pleasantly surprised how well she took it. She said that they were willing to try and see how things work out. And everyone in the office chimed in with hopeful things they've heard about autism lately (this happens to me a lot these days)

J. and B. have a new game to play together. J. holds the hose, with a sprinkler attachment and waters the grass, and the deck and parts of the house. B. stands in the spray with a huge grin on his face, laughing out loud. J. is thrilled to be able to make B. smile. We aren't sure but we think we heard B say "wawa" for the first time.

G. is in a funny stage where he acts as if he's forgotten most of his signs. But he did use the sign for "mom" (in reference to his large toy duck, not to me, but we're getting closer) and he did kiss me two times in the last two days. He's kissed his toys before, but never me til now. I am going to assume that G. hasn't really forgotten all those other signs, because whenever I freak out about one of these stages, so far they have always passed.

I have GOT to download that browser that will let me load photos. We still have dial-up service which seems to be the internet equivalent of using carrier pigeons or the Pony Express, and the download says it will take three hours. I am going to start it downloading this evening, because I've got some great pictures.