Thursday, September 27, 2007

The Legs are Looking Good

The ECI physical therapist came today to check out the twins. She said the leg length discrepancy looks minimal. There's a more noticable difference in circumference, but that shouldn't cause problems. She also said she had worked at Shriners' Hospital with kids going through leg-lengthening, but those kids all had dramatic length differences. Apparently, if the difference is small, a person may limp, but might not even need a lift in the shoe.

So, overall, very reassuring. It's a great feeling to have an evaluation turn out this way.

To be fair to ECI, they are really redeeming themselves in my eyes lately (somewhat). They've hired an autism specialist, who comes to our house weekly, our new developmental specialist is great, and an OT showed me how to massage B., and lent me a book on massage for children. Although, the main reason I'm judging them less harshly lately may be that they are just supplemental to all the private therapy we're getting.

I tried to show how much better the birthmarks have gotten with these two pictures, showing G's right arm. i hardly notice them anymore.

Wednesday, September 26, 2007

Video from Special Rodeo

We still haven't developed the disposable camera from the rodeo, but there is a video on their website.

If you have some extra time, and are in a sentimental mood, watch it. One of the twins is in it, looking at someone in a cow costume (very briefly)

There is some debate in our family about which twin it is! Well, they are identical.

In other news, we are getting a physical therapy evaluation. This is nothing to do with autism. The twins each have a slight leg length discrepancy, due to extensive birthmarks (fading gradually) which somehow inhibit growth and muscle development. This used to be what kept me up nights, before the whole autism thing. Our pediatrician sent us to a leg lengthening specialist, before the twins were even a year old. What I learned from that visit is that leg-lengthening is something you really do not want your child to need.

I'm hoping the physical therapist will check them out and say that the discrepancy is nothing serious. They don't limp, as far as I can tell at this point. If the discrepancy stays small, they can wear lifts in their shoes, which sounds great compared to the alternative.

G. had a little feeding therapy today, and ate a speck of whipped cream on a goldfish cracker.
Every day has its triumphs!

Friday, September 21, 2007

Language explosion

About a year ago, I kept thinking that the twins were due for their "language explosion". Wnen their big brother was almost two, he started saying all sorts of words, adding new ones every day. When the twins were almost two, although I was well aware of their being on the spectrum, I hoped that they'd suddenly start talking. Echolalia, song lyrics, whatever, I didn't care, I just wanted to hear words. It didn't happen, although once we started watching sign language DVD's, we did make leaps with language for a while.

Lately I think we are having the long-awaited explosion where G. is concerned. For a long time, he amazed me with the signs he could pick up from DVD's, but somewhere in the past few months, he's begun to prefer speaking. Today he said "guitar" and "slow" and "stuck", and probably some others that I've forgotten. I just love hearing his voice, and I especially love how he'll turn toward me, hold something up, and then name it. A year ago I remember worrying that he never showed me things (one of those classic diagnostic questions). Now he is so eager to show off. He even said "hi" when a neighbor came over today.

This makes me feel all the more determined to hear what B is thinking about. I know he will have things to say, eventually. He is chugging right along with his ABA, so we're headed in the right direction. He's a man of mystery--usually aloof, but then coming out with a word or a killer smile when you least expect it.
And every one of those words and smiles is so worth waiting for.

Sunday, September 16, 2007

Had a better day

Today my hope is creeping back. We went to church, and B. did great--walked from the car into the classroom, tried to color with a marker, didn't cry much, and so on.

Then J. and I took two toy fishing poles and went "fishing" at a local park. It was very relaxing. The only way I can possibly enjoy fishing is to be absolutely certain I won't catch anything. The thought of actually having to do something with a poor, panicky fish is not my idea of recreation. We had magnets on the end of our lines, so I felt pretty confident.

Right now we are experiencing the miracle of three kids asleep at the same time, and I'm going to go watch an episode of "The Office" (American version). My "Office" dvd's are my favorite couch-potato escape these days. I watch everything: the deleted scenes, the commentary, everything. I just love that show.

Thank you to Burgiboogie for letting me know that you can put four-year-olds in strollers! I should be in really good shape by that point, considering that they are already pretty hefty.

Saturday, September 15, 2007

Down in the Dumps

Warning: self-pitying vent ahead

I'm up too late, tonight, seeking solace in reading other bloggers' thoughts. I feel as if almost every day someone says to me, "I don't know how you do it" I usually say something about caffeine, or that I'm lucky the twins are very mellow. Recently that mellow-ness is disappearing, which may be good for them, developmentally (I think!), but not for my ability to cope.

I feel as if I've hit a wall, and I can't find the energy and optimism that usually gets me through the tough parts. J. can't understand why B. cries so much, or why G. plugs his ears and cries in response to B's crying. J. acts out, and then I end up mad at him. It's not a great cycle to get into, but it happens at least once a day.

Going places with all three kids on my own is really, really difficult. Even with just the twins it's hard. I'd like to take the twins to parks while J's at school, and let them get some exercise. Both are pretty good climbers on playgrounds, but their balance and judgement has not kept up with their ability to climb.

They won't walk places with me...they go limp and lie on the ground, or try to run away. Occasionally one will walk well with me, but I can't risk it with two, especially if there are cars around. So they end up in the stroller, which they are out growing. What will I do when they don't fit in the stroller? Right now my plan is to find a bigger stroller.

The twins hardly eat any foods that are really food, if that makes sense. I know this is common, but I'm not sure what to do about it.

My husband says maybe we are at the hardest age right now. Once the twins can communicate better, and when J. is old enough to understand the situation better, things will get easier (we hope) And, most likely, they will graduate from the stroller in the next couple of years. I remember when I worked at a private school for kids on the spectrum, almost all of the kids would follow along when we took walks through the neighborhood. There was some bolting, occasionally, but I don't remember many kids lying down on the ground and refusing to move. So maybe that's a toddler thing.

I really look forward to being able to take walks with all the boys, and I've got to believe it'll happen.

Usually I fixate on the bits of progress I see, and that keeps me going. G. is a riot these days, saying new words all the time and trying his best to sing the alphabet song. He is replacing "Oh, no! Careful!" with "Okay!" as his favorite utterance. B. has taken to quietly reciting the alphabet, but almost without moving his lips (I don't know if it's progress, but it's interesting to watch). J. is really liking Pre-K, and is asking tricky questions like "Do clouds sleep?"

I feel a little better having written this. I'm thinking of finding another college student to help us get out of the house more. With another adult I can actually work on the walking problem, and go to playgrounds, the mall, etc. Something needs to change to get us back to our old happy state.

Thursday, September 13, 2007

And so it begins!

Well, the twins will be three in December, and the powers that be would like me to send them to PPCD (preschool program for children with disabilities). Having taught special ed in this district, I've formed the opinion that for kids with HFA (which we don't have), PPCD can be great. For others, it can be less than great, to be polite. There is one program for kids with language issues only, and another for everyone else. My guys would be part of "everyone else".

I'm generally a soft-spoken type of person, and right now I need a potion to drink which will make me ferocious, or at least, assertive and articulate. I know my reasons, but I want to be able to express them in a way that doesn't (completely) alienate the school district, while letting them hear what could be better.

Right now the twins get hours of 1:1 services, and to sign them up for PPCD, I'd have to give up many of those hours.

What I need to do now is sit down and write out my reasoning, read it over, and practice (each time an ECI therapist brings it up) expressing what I know is best for the boys.

Sunday, September 9, 2007

Our First Rodeo

Being that I've lived in Texas for seven years (could this be true??) it is strange that I had never been to a rodeo. Never until yesterday, that is, when the whole family attended the Baytown Special Rodeo.

This rodeo was special in the way that the Special Olympics are special, and also in every other way. I had hired a babysitter to come with us, so the twins wouldn't be stuck in the stroller. But when we picked up our packets (which included cowboy hats, bandana and sheriff's badges), they introduced us to our "Rodeo Buddies". Each child had a buddy assigned to him or her, so that the parents could relax and have fun. What a great idea!

B. was fine with his buddy, but G. was terrified by his. So Rob, a ninth grade boy scout, followed me around, and pretty much talked my ear off. After about twenty minutes of knock-knock jokes, and verbatim routines from sit-coms, I was starting to get a feeling about Rob. Then, out of the blue he said to me, "Have you heard of Asberger's Syndrome?" He claimed to be "five-percent Asbergers". He was really a great kid, but struck me more like a sixth grader. He spent the entire time with us, and was really as helpful as the kids would allow him to be.

The best moments:

B. running in circles in front of the Elvis Impersonator as he performed.

G. walking right up to someone in an Elsie the Cow costume, and having a brief interaction. He even said, "bye-bye".

J. using his free camera to record the whole event. I hope some of his pictures turn out!

We had such a good time, and I'm so grateful to all those hard-working volunteers (especially our "rodeo buddies)

Tuesday, September 4, 2007

Things I Learned Yesterday

1. My husband does NOT think it's okay to let J. pee on the flowers in front of the mall, even when it's an emergency, and even when he was about to go on a concrete pillar next to all the people smoking. Even when my husband's parking the van and I've got all the boys with me.

2. It doesn't help my husband's mood when I can't stop laughing about the pee situation, the madder he gets.

3. When you put a purple crayon through the dishwasher, it can no longer be used for coloring (that was J's experiment, which I didn't know about until this morning, when I heard, "Oh, no. My purple crayon is gone")

4. My college student helper is a really, really good sport when it comes to sand, mud, and mosquitos.

Saturday, September 1, 2007

Where has my blogging time gone??

Due to J. not napping anymore, and my resolving to go to bed earlier, haven't been posting anything.

I'll have to describe later the events which made me decide not to send the twins to nursery school. Long story short: gossipy prejudice against special needs kids, combined with my concern about stressing them out. so on Mondays and Fridays I'll get to be with just them, with (so far) No Therapy Appointments (heaven!).

Thanks to Kristen for sending me the book "The Other Mother"! I've just started it.

G. has been trying to give hugs. I think that's what he's doing, but it's a little unconventional. He also said "elephant" and "umbrella".

Right now, G. is in bed saying "uh-oh" and "oh-no" alternately.

B. is very into looking at books, especially the Backyardigan's Journey to the Tower of Power. Not one I'd choose, but I'm glad he's starting to like books again.

More later! I miss my blog reading!