Thursday, May 31, 2007

The Night Max Wore his Wolf Suit...

B. seems to be doing well with the ABA (it's only three hours a week so far, so it's amazing if it does anything) He is starting to try to put rings on the ring stacker (if you put the ring in his hand, and pretty much give him no choice). He babbles like crazy at the ABA therapist...I think she gets him excited with all her effusive praise.

G. has decided to learn the English language starting with three syllable words. Of the thirty or so words that he can use, a big percentage of them have three syllables. Recently it's "animal", "dinosaur" and every once in a while he'll bring back "octopus". He also does a version of "Toot, toot, chugga, chugga, big red car" that sounds like it's in another language. I'm so fascinated by how he's approaching learning to talk. I think if we could sing everything we said, he might already be talking.

I don't know if I've mentioned it here, but B. has essentially stopped talking completely. I've shared my fears when G. regressed, and he's always come back within a few weeks. With B., he said so little to begin with, and the silence has lasted so much longer, I'm not sure what to think. One thing I've noticed about the ABA therapist: she's very optimistic about B., and I think he senses it. So I try to keep my hopes and my expectations high. One thing is for certain, B. is the mellowest and generally happiest member of this family by far. Lately he tends to look right into my eyes and say "Woooooo" very earnestly. It's very sweet.

At bedtime, J. has fallen in love with Where the Wild Things Are, by Maurice Sendak. I'm enjoying re-discovering it alongside him. My favorite line is "The night Max wore his wolf suit, and made mischief of one kind and another..." Max would feel right at home in our house

Sunday, May 27, 2007


About the following post: my mom and my husband have convinced me that a two-year-old screaming about having to leave the pool is not such a huge deal. It was the end of a long day, and I was feeling overwhelmed. Today I'm feeling good about having heard two new words in one day.

For the first time today, I took G. to the pool. i had taken J. and G. to the neighborhood playground, not realizing that our pool had opened today. They both ran to the fence and stuck their faces through, staring at the people in the pool.

Last year, during the summer of realizing all was not well, I never got my nerve up to try taking a two-year-old and a one-year-old to the pool (not to mention all three of them). This year I feel it's going to be possible (two at a time, as long as one of them is J.) We had a lot scrambling around looking for swim diapers and pool shoes, and headed out.

G. loved it from the start. He splashed around, and smiled at our neighbor who was splashing alongside him. We stayed in the baby pool, I don't think I could have managed it otherwise. G. tried two new words in one day, which never happens: splash and pool. He ventured off on his own a little, coming back each time to sit in my lap. We were there for almost an hour, with both of them perfectly content.

After I had marveled at how well it was all going, I tried getting them out of the pool. J. was stubborn but managed not to have a tantrum. Despite being the NT brother, he's been the most tantrum-prone until just recently. G. started to scream as soon as he realized we were leaving, and kept it up almost continuously for 20 minutes, until I finally got him in the door of our house. I had taken them there in the stroller, so we provided a screaming spectacle for all the pool patrons for our entire walk home. Our next door neighbor came out to see what was happening. I'm not sure if he knows what's up with the twins, but this may have given him an inkling.

I'm trying to focus on how much he loved the pool, and how happy we all were in the water. But I'm so discouraged by how hard it was to leave. I know that I've been lucky so far...I'd read about other kids' tantrums in public and wondered if that was in our future. Apparently it is, and I'm going to have to develop a thick(er) skin. Last week we also had a huge meltdown in the grocery store. That one involved J. crying, which made G. plug his ears and start his own yelling to block out J's noise. Luckily B. was blissfully unaffected. I decided I would stand there in the bakery department until it blew over, and it worked. I may not try taking all three of them to the store again for quite a while.

I'm telling myself it's the terrible two's combined with autism, and thinking that once the boys can communicate more, the screaming will decrease. I really, really hope this is right!

Tuesday, May 22, 2007

DSL, I love it!

I finally added a picture to my blog...not where I really wanted it (see below), but I did it! I love DSL!

I am a little worried that I may fritter away a lot of time on YouTube.

Sunday, May 20, 2007

Autism and Unitarianism--is there a link?

I've mentioned before that I go to a UU church. It's becoming a haven for us--one place in this area where I fit right in with my wild hair, minimal make-up and casual clothes. J. has made good friends, and the twins have a lot of people who will look out for them.

Lately at church I seem to meet a parent of a child on the spectrum almost every month. So far, I count one girl and five boys, in a church of 250 or so members The mom I met today I had actually met before in a Moms of Multiples Club, which I've since dropped out of. The motto of that club was "where God chooses the members". I never liked that motto, because I felt like where does that leave the moms who have had miscarriages, or moms who have had a child with chromosomal problems?--both clubs I'm also a member of. But, I digress.

Out of the ten or so kids in the toddler class, three are on the autism spectrum. The mom of the other boy and I bonded today by talking about Omega 3 Fatty Acids and Signing Time movies. Her son is doing really well, and is just now getting diagnosed at the age of three.

But why so many of our kids at this one little church? My husband says it's because UU churches, with their open-ness to agnosticism, etc., attract nerdy engineer types, and we do have a lot of those. Whatever the reason, I feel like I've found an autism mom support group without even having to look for it.

Thursday, May 17, 2007

The In-Law Visit

This past week, my in-laws have been visiting, something I had been nervous about. At Christmas time, I was still the only one who thought the twins were autistic, so there were a lot of "oh, they're fine, don't worry" comments flying around. But I have to say, this week has been wonderful. My mother-in-law cuts out articles and gives them to me, but I don't feel pressured. In fact, it's a pleasure to watch both of my in-laws enjoy all three boys just as they are. J. made sure to explain every minute detail of our lives to them, while B. and G. have pretty much ignored them. G. did repeat "Papa" several times and clap, which was a great moment.

G. also used a two word phrase! (not repeating it...he came up with it on his own). When he wants something, he says and signs "Please" ("peajh"), and then signs "more". This is really, really cute, but still leaves me with no idea of what he wants. Other times he just seems to scroll through every word or sign he can think of. We are really making progress, but we've got a ways to go before I actually know what he's talking about. At this point, it is so wonderful to hear his voice trying to say words, I'm happy to wait for him to figure it all out.

B. had his first meeting with Ms. Marie, his ABA therapist. He responded very well, and did some things for her that I hadn't seen him do in a long time. She is a really warm person, and spent most of her time singing to him and playing in a gentle way.

Another B. milestone: he took the red chair, dragged it across the room, climbed on it and would probably have reached the forbidden DVD boxes if my MIL hadn't caught him! This opens up a big child-proofing can of worms. J. can climb up and get things, but his preferred mode is always to remain at ground level and talk a grown-up into helping him. G. isn't trying to climb at all yet. But our days of being able to stick dangerous things up high are coming to a close! (Note: I'm not trying to say that the DVD boxes are dangerous. If he gets hold of one, however, B. will cease to interact with us for the entire time he has it in his hands)

So, we're having some hopeful days around here

Thursday, May 10, 2007

New Ventures

This morning Ms. Marie, the young woman who will be doing some ABA with B., came over to talk. She is an extremely optimistic, bubbly person, which makes me feel like the cranky New Yorker I often am, but so far I love her. The twins seemed to react positively to her, which is great for a first meeting. G. was lying on the floor making his baby duck kiss the mommy duck, and B. was jogging around smiling. At this point we are going to do ten hours a week, for B. only. I got the feeling she'd like to work with G. also, but since he's progressing pretty well, and we aren't rich, it's just going to be B., so far.

My husband is a bit worried about how much ABA will cost, but I think it's worth trying. I was very pushy with Early Intervention, but I ended up with each twin getting two hours of services a week (up from 30 minutes/week). That's speech and OT. For kids with so many challenges, that's just not enough. I think it's worth spending our money now, while they are so little. I don't mean put ourselves into financial ruin, but do what we can with what we have. (Piece of advice: if you have kids with special needs, do not move to the Lone Star State.)

Off and on during Ms. Marie's visit, B. was trying to get himself one of the Signing Time DVD's, which was hidden on a very high shelf (running around looking at a DVD case is a current preoccupation). He even dragged a chair across the room, and kept looking from the chair to the shelf, but couldn't decide what came next. I find it so interesting that he can think of bringing a chair over, but hasn't figured how to use the chair to reach something (I know it's just a matter of time!)

G. is singing songs all the time now, although much of the time we aren't certain which song it is. One of the lines he gets stuck on is from a song the Wiggles sing in Italian (something like "baila, bambina"). A friend of mine heard him singing it and said, "You're teaching him Italian?" Okay, I'm a bit of a crazed autism mommy, but not that crazed!

Monday, May 7, 2007


I've found a new way to feel good about autism: spend a weekend thinking your son has not only autism, but also some weird myelin-depleting condition. Just plain autism sounds great to me now.

The doctor finally called and said, "Oh we see hypomyelination in lots of our kids [meaning patients with autism]. We don't refer them to neurologists, because there's nothing you can do". So whatever it is (she didn't explain it, and I was too relieved to formulate questions), it's not getting worse, and according to the doctor, could actually improve as he starts to use more parts of his brain. That doesn't sound very medical, but she said something along those lines.

Yikes, what a crazy situation. If only that staff member could have kept quiet! I'm sure she's in some kind of trouble now.

I feel as if my brain has turned to mush. My husband kept asking if I'd asked her this or that (for example, does B. have the same condition). I don't think I asked anything once I realized it wasn't anything progressive. I was thinking. "Yippee!" and wanting to get off the phone. She also told me that his bloodwork is normal, which was good to hear.

So now I'll spend a lovely afternoon enjoying my merely-autistic twins and their merely-articulation-challenged big brother. Ahhhhhh......

Sunday, May 6, 2007

Haven't heard anything about the MRI

Thank you for all the supportive comments. It really helps. I did send an email to the doctor, but she has not responded.

Strangely, we had a really nice weekend. I just can't let myself believe that anything really bad is going on, so I'm in serious denial mode. We took all the boys to Petco, without a stroller, which was a first. My husband had B., who isn't interested in looking at all the animals, but does like to jog around the store. I had J. and G., both of whom are very interested in the fish and the birds, so we did well. I kept wondering how my husband was doing with B., and then I'd hear a loud "Zubadee, zubadoo!", which is one of the "jargon" phrases that B. likes to say when he's very happy.

This morning I took B. and J. to church with me. As J. later reported to me, "Him just cry a little". B. even sat at the table for snack, so the morning was a success. When I went out to the playground to pick the boys up, B. was up on the play structure, looking very pleased with himself. G. stayed home and napped, because he had woken up at five saying "Ah-doo! Ah-doo!", which means all done with sleeping, apparently.

I figure, if we are going to find out that the MRI doesn't show serious problems, then I won't need to have worried. And if there is a real problem, then it's good that we had a weekend together of enjoying ourselves before we start dealing with it.

Saturday, May 5, 2007

MRI Trouble

This is the worst weekend of my life. Yesterday someone from the developmental pediatrician's office called and said, "I forgot to tell the doctor that you called about the MRI results, but I'll tell you what it says."

I wasn't really processing what she was saying, but first she said "otherwise normal", and I just heard the word "normal" and started to relax. Then she said "I'm trying to look up this word...hypomyelination..." And she said "Don't tell anyone we had this discussion, I'm just clerical". Now I keep thinking I should have said, "Stop talking, let the doctor tell us!"

Anyway, the doctor had already left, and we just have this word "hypomyelination" to think about. Googling it led me to things like muscular dystrophy, so I'm trying to stay very, very busy, and pretend I've never heard the word.

But I don't know what to think. G. is the one who is saying words, and smiling at me, and pointing, and laughing at silly things. Could he just be missing some myelin, not losing it? And if the twins are identical, how could this be on G's MRI and not B's? Although a lot can happen after the egg splits.

It seems to cruel that G. would have autism and also some problem with his myelin. In my googling, I couldn't seem to find any benign myelin problems, but I did have to get off the internet at a certain point, just to save my remaining sanity.

We don't know how to page this doctor, but it just occurred to me that I have an email address. I'm going to try emailing.

To anyone who might be reading this, would you find a way to page the doctor if you were me? My husband has decided it must be something benign, and thinks we should wait for Monday.

Tuesday, May 1, 2007

Why does she keep giving me bananas?

I had a revelation yesterday. G. did what I thought was his sign for banana, and then said "Chugga, chugga, woo, woo!" (the woo, woo is a new accomplishment, and I'm thrilled about it). He ran across the room and got a train. A light went on in my head, and I finally understood why he'd been signing banana in strange contexts and refusing the bananas I offered him (when they make a request, I fall all over myself trying to respond, thinking it'll encourage them to keep requesting). Overall, G. is much more interested in trains than bananas, so it all makes a lot of sense. I wonder how many other of these misunderstandings we're having. It's got to be frustrating for him, but I think he's getting a lot more motivated to make us understand, which is so great. Yesterday he said "hot" and "backpack"--two new words in one day

On the B. front, I'm meeting with a woman who may provide us with ten hours of ABA a week, just for B. She seems very experienced, and is really reassuring to talk to. Really, I felt so relieved talking to her that I think I'd pay her just to come to our house and hang around.

Tomorrow is G's MRI. Now this is a child who has never drunk a clear liquid in his life. And the MRI is at 12:30, so he is going to be like an angry grizzly cub at that point. My plan is to give him apple juice in a medicine dropper and see how that goes. B.'s MRI came back totally normal. it almost seems that we could cancel G's, since they're identical twins, but I don't think the doctor would go for that.

I signed up for a scrapbooking retreat in July. I'm not that much of a scrapbooker, but I am definitely ready to retreat. I have never, ever been away from all of my children since the day J. came home.