Thursday, March 29, 2007

Moving Onward and Upward

To get the whole hospital visit thing out of our system, my sister and I took the boys to the Moody Gardens aquarium on Galveston Island today. it's so wonderful having my sister here. When I was living my single life back in Boston, we saw each other every weekend, which was great.

The last time we went to the aquarium in July or so, B. and G. seemed completely unaware of where we were. This time they loved it. G. (who has a slight penguin obsession) stood with his face squashed up against the glass, staring at the penguins. Some of them swam right up to where he was to check him out. B. went into his happy dance, clapping his hands and doing his fancy footwork the whole time that he watched the penguins. J. enjoyed it, too, although he was torn between the penguins and the seals and had to keep running back and forth. He especially liked a glass tunnel in which you could see sharks swimming overhead.

We had a picnic lunch and then walked down to look at the water. We happened upon a great playground, and spent a while there until all three boys started to hit the fatigue wall and get cranky. This time it was J. who got into the fire ants, but we got them off before they bit him. He wanted to play with the giant chess set which was near the playground, so we gave it a try. He's starting to be very interested in playing games, although chess for him right now consists of hugging the knights and ignoring all the other pieces. I can't wait until we can really play board games.

This afternoon I felt as if B and G were trying to prove the doctor wrong about the MR thing (which at this point is pretty meaningless to me, anyway). B has been saying "up", and a few other things. G. was trying to do the motions to "Head, Shoulders, Knees and Toes". When J. and I were playing hide-and-seek, both the boys tried to chime in whenever I counted to ten.

Playing hide and seek with J. is funny, because first of all, he usually hides in plain sight. Then when I try to ham it up, and look all over, saying "Where could J. be?", he can't help yelling out, "Here I am!" Today the twins got very excited whenever I counted, and ran around the house when I got to ten. It was nice because we were all playing together, even though they weren't actually looking for J., as far as I could tell. Although, I can certainly see how the point of the game isn't clear to them, given the way we play it!

My short term goal right now is to replace some of G's lost wooden penguins. He started with three, and right now we are down to one, which has been chewed on quite a bit by the dog. I actually called the toy store in Massachusetts where my friend bought them, but they were out. I'll try the internet. I know he'll deal with it if the last one gets lost, but he's so cute when he plays with it. It jumps around, goes for a ride on a kiddy bike, kisses other little animals, etc.

Wednesday, March 28, 2007

Developmental Pediatrician, etc.

Well, I finally realized why I'd been feeling so negative lately. Our appointments with the dev. ped. were coming up, and I know deep down that we wouldn't hear "mild autism" or "sensory integration problems", which is what Early Intervention said originally.

So we went in to TX Children's Hospital, yesterday and today. B. and G. dealt with it amazingly well. G. was especially excited by all the fish tanks, and Brendan was just happy to run around the waiting room with a big grin on his face. Everyone kept commenting on how calm and happy they were (they were there on different mornings, but we got the same comments). Mom and Dad weren't so calm, but we did okay, considering. We always seem to get along best in real high stakes situations.

The doctor saw G. first. She (the dr.) has a very nice manner, relaxed and encouraging. Even though G. and B. basically couldn't do much of what she presented them with, she still said lots of positive things about them. In the end, though, she said that she believes they both have autism, and fall in the category of mental retardation. They each have their areas of strength, of course, but overall her assessments of them were similar.

She did say that they have lots of potential, and she's impressed with how much expressive language they have already learned. When she was observing G., he kept making his little toy man kiss his toy duck, which I thought was pretty impressive (not to mention very cute).

Her diagnoses weren't a surprise for me, but I still feel like I'm grieving in a way. It's one thing for me to believe they are delayed and autistic, it's another to have a specialist tell me they definitely are. On the other hand, we now have letters of medical necessity, which we hope will force the insurance company to pay for private therapy.

They had to get blood drawn, to check for genetic anomolies. G. was relatively okay with it, except for the actual stick. B. was so mad about being held still that he didn't even react when the needle went in. It took him a long time to settle down. They both fell right to sleep on the ride home.

We are supposed to schedule MRI's, and also speech and OT evaluations. For the MRI's we have to go back to TX Children's, but I'm happy to say we can do the other evaluations and therapy practically in our own neighborhood.

I feel like this post sounds kind of detached and cold, but I'm a bit burned out after the last two days. Telling my parents was the worst part, although by the end of the phone call we were all just talking about what wonderful happy boys they are, and my mom had basically convinced herself the diagnosis is wrong. I don't blame her. It doesn't matter that much what the label is if they are happy.

Thank you to everyone who's posted such encouraging and helpful comments.

Saturday, March 24, 2007

Biomedical approaches?

My husband brought home a Discover magazine which has a very intense article about autism.

Much of it concerns the possiblity that many cases of autism are caused by an interaction between genes and environmental toxicity. The article also has a lot to say about DAN doctors, chelation, dietary approaches and supplements.

I have mostly focused on behavioral approaches (PECS, Floortime, etc.) so far, because I find the biomedical approaches so overwhelming. I did take B. off of dairy products for three weeks, but I almost felt that it had a negative effect.

It's so easy for me to get caught up in thinking "Am I doing the right thing?", "Should I be doing more research?" and on and on. I know that getting really anxious does not help anyone, so I need to calm down, think things over, and make decisions gradually.

It doesn't help that my husband so far wants me to make all the decisions, because I have my masters in Special Ed. That is too much responsibility for me. Sorry if you are reading this, honey, but it's how I feel.

Just had to vent. Having a negative moment.

Thursday, March 22, 2007

Ants in our Pants

Lately B. has taken to plopping down in the grass and gently touching the white clover blossoms which are everywhere right now. That sounds so lovely, and looks pretty sweet, too. The thing is, his interest in objects usual progresses through three stages:

- lightly touching with the fingertips (a couple of days)
- putting object gingerly up to his lips (one day)
- consuming whatever the object is as quickly as possible (indefinitely)

Well, we are only in stage two with the clover at this point, but there is a certain drawback which comes along with the whole exciting Texan lifestyle: Fire Ants.

Due to a very brief clover appreciation session today, both B. and I have fire ant bites on various body parts. He is doing much better than I am at ignoring them. I am a big baby about fire ant bites. I alternate between looking at them, scratching them, asking my husband to look at them, and so on. After one dose of Benadryl, B. doesn't seem to notice them at all.

I am ready to start a campaign to bring in some very tough breed of aardvark, but of course this might throw off the whole delicate armadillo/fire ant/flying cockroach ecosystem that we enjoy here in southeast Texas. I really do try to hide it, but sometimes my ambivalence about the Lone Star State comes sneaking out.

But seriously, I'm wondering if a social story about fire ants would help. My three-year-old recognizes their ant hills and steers clear, but B. and G. still see them as an inviting pile of sand. So far I just yell out "Ants, bites, boo-boo" and things like that, and sometimes that does startle them into changing direction.

Tuesday, March 20, 2007

Why are Some Days So Different? and other thoughts

Some unrelated notes:

This evening B. was being so friendly and playful. He kept looking me right in the eyes and smiling and laughing as we played. I kept thinking back to what he ate today, or what activities we did. Nothing in particular was different. I did buy him a sugar cookie at the mall, which I don't usually do. Hmmmmm. He also seems more interactive after drinking milk, which goes against so much of what I read.

I bought some particularly "stimmy" toys today, in hopes to use photographs for choice-making play sessions. One is a deck of cards with Nemo pictures and alphabet letters on it, another is a squishy ball that lights up, and one a helicopter with a thing you can spin (can't think of the word....need sleep!) I want to find some more cheap and irresistable toys which we will only use for this type of activity. Each Early Intervention therapist has said to me, "We have to get them to stick with an activity longer, they just run from thing to thing". Well, this is partly true, and partly that they are actually running away from the therapists. With grown-ups they are fond of, they will sit and play for stretches of time (not compared to what their brother was like at their age, but for short periods).

G. has become attached to a creepy-looking toy bat which we were given at Halloween. He carries it around and signs "bird".

The other evening, we were watching Barney. When Barney started singing his final, sappy song, B. jumped in my lap and looked up at me and smiled. Most likely, he was fleeing his older brother, who tries to put the twins in a head-lock of a hug every time he hears this song (he means well...he also tries to hold their hands and sway back and forth, which both twins hate). Whatever the reason was, it was a nice moment.

Monday, March 19, 2007

Better Weather Equals Better Mood

Seem to be feeling better, which is a relief. We've been getting outside a lot, running into neighbors and chatting, which cheers me up.

This Wednesday I'm supposed to accompany a friend to some sort of champagne lunch with aromatherapy and massage at a fancy clothing store in downtown Houston. This sounds great, but I am going to have to do a mini-makeover on myself between now and then. Yesterday I found myself applying "stain stick" to my shirt while I was still wearing it. And I hate to say, but I didn't take the shirt off right away, I continued running around with it on for another hour.

When I go out into the world, I assess my clean shirts for the one with the fewest Aquaphor and Desitin stains. I'm not sure why it is, but the ointments we use for diaper rash seem to be the hardest things to get out of clothes. And the twins flip and flop during diaper changes like huge fish fighting to get back to the sea. That sounds like a bad thing for a mom to say, but it's the analogy that always comes to my mind. By the time I get Aquaphor onto the key areas of the boy, there is usually also some on me. On the other hand when my husband will watch the kids so I can go have champagne and aromatherapy, I'll go in a shower curtain if I have to.

My sister is coming to visit from Massachussetts next week, and I'm so excited. We always have a great time together. She's going to be here to help out when we take the twins to TX Children's Hospital to see a developmental pediatrician. G. goes on Tuesday, and B. goes on Wednesday. I can't imagine they'll tell us anything too surprising, but I'm hoping they'll have some helpful suggestions.

Thursday, March 15, 2007

Can't Shake the Blues

I keep starting to write a new post, and I never finish it.

Everyone in the family is doing pretty well, but I'm just a bit blue. This actually seems like a pretty normal reaction to our family situation, but until now I'd focused so hard on being super autism mom that I didn't have time to get sad. My husband tries to be helpful. He is still convinced they are going to grow out of this, and just be slightly eccentric. Believe me, that sounds like a great outcome. And I do love them the way they are (which is very sweet, most of the time), but I also worry about them too.

Despite my current gloom and doom, we had a really fun time this morning. For the first time, I took them to a playground all by myself (well, I have done it before, but usually kept at least one of the twins in a swing or stroller, to prevent anyone going AWOL). It's a fenced playground at our local elementary school. We even had a picnic, and they all had a blast. G. and J. jumped in puddles, and B. went down a slide a couple of times before becoming fascinated with the mulch. It's a beautiful day out, and it did jolt me out of my slump a tad.

Sometimes I'm so glad that no one (except my husband) knows I blog. I can say whatever I like. There are several people (family members and friends) who are determined to say that the twins are just fine. My coping mechanism right now is to respond with, "hey, I bet you're right" and change the subject. It's not my job right now to explain early childhood milestones, and that it's strange when your child does not hug you, or know his name, or want to get your attention. On this blog, I can go ahead and say that I'm worried and I'm not always as optimistic as I could be. For one thing, there aren't many people reading it. And those who do read it have probably been down this road themselves.

So, bah humbug, or whatever the seasonal equivalent is. I'm sure this mood will pass! Until then, I"ll self medicate with chocolate.

Movie Note: despite my funk, I really enjoyed watching Stranger than Fiction. It had an unusual plot and an interesting sound track.

Thursday, March 8, 2007

Attack of the Two Year Olds

Just in the last two weeks or so, the twins seem to have read the memo and found out that they are "terrible" two's.

Looking back, one of my clues originally that all was not right in twinland was that they were just so quiet and agreeable, almost all the time. Their brother could take a toy from them, we could go anywhere, leave anywhere, put them down for a nap, pay attention to them, ignore them, and no matter what, they were mellow and relatively happy.

G. was always more attention-seeking by far. He'll whine, or do a dance, or use signs or a word to get our attention. With B., I've never known just how much he understands of what's going on around him.

Suddenly they are trying to out-do each other in attention-seeking, with most of it being the wailing, throwing-yourself-down-on-the-ground variety. They get mad if the other one's waffle looks larger, or if I comfort one after a tumble, seemingly neglecting the other, and on and on.

It makes for a noisy household, but it feels far more "normal" than the quiet of the previous two years. I have to admit that they've gone through cranky stages before, but this is the first time that the crankiness has seemed related to other people (rather than colic or teething, or some such thing).

J. on the other hand is in a really sweet, affectionate stage. As I put him to bed last night he said, "I love your teeth, Mom".

Saturday, March 3, 2007

Back on our Feet

Thanks for the well wishes after the previous post.

B. went through the same lethargy as G. had. For him it was several days after the stomach symptoms. Because he's not as communicative to start with, it wasn't as dramatic a change. It is a real relief to have everybody up and being as demanding as ever (a pain in the neck, but still a relief).

Great new development: sometime in the last few weeks, B. has learned to raise his arms when he wants to be picked up, which I find completely irresistable. It's interesting how those social milestones still happen, but so delayed (he's 27 months old now).

G. is trying so hard to talk! Except for waffle, he hasn't added any words recently, but he will walk up to me, stomp his foot, yell out one syllable, and slap his thighs with his hands. I'm not sure if he has a word in his mind, or if it's a more general dissatisfaction he wants to express.

I went to my first Chuck E Cheese birthday party today. Ye gods! I'm not someone who thrives in an atmosphere of a lot of flashing lights and noise. I'd say J. dealt with it well (his first birthday party that didn't eventually dissolve into tired tears), but he did spend almost all of his tokens riding on a Telletubby ride that was intended for the really little kids. He looked so blissful that I didn't try too hard to get him interested in the flashier activities.

Last night we watched "Walk the Line", about Johnny Cash and June Carter. I'd give it three out of five stars. Reese Witherspoon didn't work for me in that role, although I've liked her in other things.