Sunday, October 28, 2007

ASA Picnic

I managed to calm down after the doctor's appointment, largely due to a picnic we attended on Saturday. It was held by our local branch of the ASA, and it was encouraging, relaxing (as much as taking our 3 boys to a big park can be), and just such a relief to be with families who understand.

There was a ton of food set up in one pavilion, but not many people sitting down at any given time. Most of the conversations took place quickly, as we passed each other on the playgrounds or swings, or while juggling plates and children.

One thing I noticed was that the parents of teenagers got to sit down and eat a regular meal. The parents of kids under ten or so were doing lots of running, chasing and generally following kids around.

Once the twins had worn themselves out I had some actual conversations with other parents, and felt validated for sticking with my approach of some ABA and a lot of intensive playing, singing, jumping and so on, in a natural enviromnent. One mom kept telling me "Buy them a computer!" because her son has taught himself to read and do all sorts of other things on the computer. He was the cutest little five year old, walking around reading every sign he could find.

I finally figured out what G. means when he points to his chin and says, "Boo". He saw a lady with a plastic spoon, and started following her around saying "Boo!" and "Peesh!" (please), until she went and got him his own spoon. He has a thing he does where he bounces a spoon up and down, and says "one, two, fwee, foe". I'm sure it's from a movie.

Now if I could just figure out:

"Fwee, fwee...oooooooooo"
"Care-a bear-a" (it's not care bears, because he doesn't know them)
and about twenty other things that he says all day long, I'd have some peace of mind. I feel as if I live with someone who constantly speaks to me in a foreign language, and I do mean constantly.

As usual, we only managed to take pictures after everyone was exhausted.

Friday, October 26, 2007

Vent after reading dev. ped's report

Today we got the report on G. from the developmental pediatrician. I'll have perspective in a day or too, but right now I'm hurt and mad. I'm actually pretty much over the hurt, and fully into the mad.

What I"m upset about:
After a few minutes of observing him she concludes:

G. is on a 16-month level in language (that might be right, but I'm annoyed anyway).

He makes little or no eye contact (not true).

He can request a cracker with a word and a sign.

He has low-set ears.
And so on.

Then there was a cut-and-paste section of suggestions:

- he should sit in the front of the classroom (he's not even three)

- parents should try to spend at least 30 minutes interacting with the child per day (I'm a stay-at-home mom!)

- use positive reinforecement (she gives examples such as saying "Good Job!" or giving a hug and a kiss)

I know the last section was just there because they must put it in every report, but I think most parents would be offended by the suggestion that they start saying "Good job". Yes, that's why we wait months to see a specialist! I'm supposed to be hugging my child? Why did no one tell me this before? No wonder he's autistic

The fact that she wants me to get him 25 hours of ABA, and then reminds me to spend thirty minutes a day with him pretty much sums up the difference in our philosophies. And I do believe in ABA, for some kids. And G. is getting some ABA, and probably will get more.

I'd be fine with the ABA recommendation if the rest of the report seemed more personalized, or even as if she had spent more than ten minutes on it.

We aren't planning to go back, although my husband doesn't want me to "burn any bridges", in case we need the clinic for referrals or letters of medical necessity in the future.

I plan to write something up,and then talk to the social worker, who seemed a little more concerned about us as individuals and as a family. I feel like I could go out and run five miles, or fire off a nasty email. I'll probably take the dog for a walk, then put on my pajamas and read my mystery.

Meanwhile, to counteract all of the above:

G. talked my ear off today, to the point where I said to my husband, "Let's pull B. out of speech therapy. We need one quiet one in the house!" (That was a joke, in case the developmental pediatrician ever reads this)

B. keeps trying to sing "Sing, sing a song" from Sesame St. He says "Siiiiiiinnng, dadee sooooooonnnng". It's very, very cute.

Wednesday, October 24, 2007

Bring on the Echolalia

We went back for our six month check-up with our developmental pediatrician. The twins went together this time, which worked fine and saves a lot of driving and child-care scrambling.

The dr. hasn't given us her report, but she did say B. is about where G. was six months ago. I have to say that while I like the dr's manner, I don't put much stock in her assessments. B. and G. are so different, it really has no meaning to say that B. is where G. was at any given time. She also said that they are both at about 12 months in their fine motor skills. They are light years apart in their fine motor skills, as far as I can tell. I don't know if we'll bother going back again in six months. She also wants us to put both of them in intensive ABA programs.

I was feeling very ready to leave when G. gave me a pick-me-up. The social worker and I walked into the exam room together, when G's face lit up and he said "Hello" in a loud cheesy voice. The social worker was thrilled. Only my husband and I knew that he was being King Midas from a "Between the Lions" CD we have in the car. I almost shrugged it off at the time, because G. is constantly singing something from a movie or CD these days. Once I thought about it, though, I realized it was the first time he's said hello to me. Wow. I'll probably take this back someday, but right now, I'm loving echolalia.

Friday, October 19, 2007

I've been having some lovely times with B. lately. He is determined to jump with two feet off of the ground, so we stand in front of the mirror and jump together. We also do a sped-up type of jogging, which I think is inspired by the Wiggles. He loves to be swung back and forth with my arms under his armpits, watching himself in the mirror (although I don't know how long my back can keep that up). I feel connected to him when we do these sorts of things. He'll look right at me and smile, and maneuver me into a position to keep me doing what he wants. If I work at it, I can get him to say "jump" or "swing", but sometimes I'd rather let him enjoy what we're doing.

I was just saying to someone that B. doesn't name his letters anymore. I figured he still knows them, but has moved on to other things. Then tonight in the bathtub, he started picking up foam letters, saying the name, and throwing it into the air behind him. He may not do it again for months, but it was nice to hear it. A little trip down memory lane.

I can't even begin to say all the things G. is doing lately. Naming his colors, trying to count things, giving me kisses. He also sometimes calls some of his ducks "mommy" and "daddy", but still not his actual mom and dad.

J. is doing great at school, and giving me a real run for my money at home. He is so jealous of any time I spend with the twins. But when I try to take him somewhere for special "mommy time", he wants to bring the twins. I can't figure him out, but I'm trying hard to stay calm and understand what he needs.

Sunday, October 14, 2007

Zoo Day

We had a terrific day yesterday, at the Zoo with a local autism group. I'd never met any of the families, but connected right away with a few of the other moms. One was a fellow New Yorker, there with her 13 and 11 year old sons, the younger of whom has autism. She is appalled at the services available here, and kept advising me to move back to NY as soon as possible (we'd love to, but need a job!). She's been going to school district meetings, and says "No one here speaks up or complains!" She was very supportive of our decision not to send the boys to PPCD.

J. loved her two boys, and they helped him ride the merry-go-round, while I rode with G. He was desperate to get on the thing, and then was afraid to sit on an animal. So we sat on a bench, with him covering his ears and grinning from ear to ear.

We ended up separated from my husband and B., because B. fell in love with the fish building, which was dark and cool, and which allowed him to run free.

J. discovered the goat-brushing area, and happily brushed goats for a long, long time. G. did not want to get close to the goats, but was interested in the chickens, and kept trying to find a way into their pen. Shortly after that, my friend's 11 year old disappeared, and we spent twenty minutes locating him. She stayed amazingly calm (I would have been frantic, but I guess he doesn't usually go far). He is pretty quiet, but can write his name and address, if someone thinks to give him paper. She said he used to have a medic-alert bracelet, which I've thought about for the twins.

We all met up for lunch, and got a chance to get to know one another. Both twins fell asleep, and J. talked me into a giant bag of popcorn, so I actually talked to adults for almost an hour! We live all over the greater Houston area, but many of us want to get together again soon. We automatically had so much to talk about. especially food issues. There were at least four kids having goldfish crackers and not much else for lunch.

I didn't used to be much of a "joiner", but autism seems to be turning me into one.

Wednesday, October 10, 2007

Tuesday, October 2, 2007

In Appreciation of B.

Lately, in the midst of some discussions about "recovery" and "cures", with some talk of high- or low-functioning kids mixed in, I've had a real chance to think. I've realized that so often I think about the twins in terms of their relative progress. Who has said what word, who can take their own shoes off (neither!), who can stack one block on top of another. It's exhausting. And it's making me feel like a failure at mothering B.

Not a failure, that's too strong. But I try the same things with each boy, in fact B. has gotten more therapy, and their development is so dramatically different.

But starting now I've had enough of seeing B. in terms of what he's not doing yet. I want to enjoy him for his B.-ness. He dances in front of the mirror. He shakes with pleasure when he sees an FBI warning on a favorite DVD. He says a word now and then, for his own enjoyment. He absolutely loves the pool and the bathtub. He finds Angelina Ballerina hilariously funny. When he hears the "Between the Lions" theme, he screams with excitement. He likes to rough-house and jump on the big bed. Occasionally he'll stare into my eyes.

I've read a lot of other moms describing this feeling, but I didn't get it. I was still too new to the situation, trying to squeeze all the floortime I could into their "window". Tonight, I'm content (and unbelievably lucky) to be B's mom, just as he is, and however he ends up being.