Friday, November 28, 2008

A Thanksgiving of Firsts


Yesterday we had the best Thanksgiving we've had since we've had kids.
We started out at the Houston Zoo, where the big "first" was that both twins spent most of the time holding our hands and walking (!) Also, we all rode the merry-go-round together, with no tantrums, panic-attacks, crying, etc.-- just lots of smiles and sitting up, and only a little chewing on the merry-go-round equipment. It all felt like a normal, fun family outing, and less like a desperate attempt to have a fun family outing.

Next I made a sweet potato casserole. Making it was fun, but it turned out more like a dessert than a casserole. Not too healthy unless they discover the life-extending effects of two sticks of butter very soon.

Finally we actually went to a Thanksgiving get-together with a bunch of friends from my husband's work. For the last few years we've had quiet Thanksgivings at home, but this year I was determined to change things up. The only other child there also has autism, and had brought many alphabet-related items, so the living room was filled with boys looking at letters for a good part of the evening. It was great to see people I hadn't seen in a while, laugh, eat too much and relax. J. had a nice time with a box of space-shuttle type toys, and also experimented on the piano. I wondered what he thought of the evening, having been the only "NT" child there, but as we drove off he announced, "I had a lot of fun. Let's go back soon".

Sunday, November 23, 2008

A Mom Milestone

Last night I spent more than an hour in Barnes and Noble, and did NOT read any books in the Special Needs section! I walked past it and thought to myself, "No, I'm going to go find something else". I ended up with Learning to Bow: Inside the Heart of Japan, by Bruce S. Feiler. I've just started it, so I can't say much about it yet.

I also went into the music section and listened to various CD's. It was a nice, relaxing night.

Thursday, November 6, 2008

Si se puede!

I spent election day with a lump in my stomach. Living in Houston, Texas, where Obama yard signs were stolen on a regular basis, I just couldn't imagine that the US could elect Obama. Watching the returns, I felt a bit hopeful, and then after they announced Ohio, my husband started celebrating, and my dad called, but I still didn't believe it.

The day after the election I kept getting teary-eyed with happiness. I feel as if I'm still coasting on the good feelings. I know he's got a lot of work to do, but I'm just so, so happy.

Saturday, October 25, 2008

"Give Me a Cookie"


Lately we've been listening to CD's from the "Bounce" Collection (Spectrum Connections). The songs invariably get stuck in my head, which I guess is the point, because yesterday G. looked at me and said, "Give me a cookie". That's a direct quote from a Bounce song, and he said it just after I had said, "No more cookies. You just brushed your teeth." I almost fainted when he said a sentence, and you better believe he got a cookie!

Thursday, October 16, 2008

Adoption Celebration

For whatever reason, increased focus on the potty has meant decreased blog-reading and blogging for me. B. continues to surprise me with his toileting successes, although I still have to be happy with peeing/pooping in the general potty vicinity. In the morning when he's still dazed, things go where they're supposed to, but once he's awake, it's literally hit-or-miss.

Yesterday was the four-year anniversary of J. joining our family! We took him out to one of those hibachi-table Japanese restaurants. We'd been there with friends, and thought J. would enjoy the silly patter and the showmanship of the chef. Unfortunately, we ended up with the first scary/cranky/clumsy hibachi chef we've ever met. I think he was trying hard, but he kept addressing J. in a gruff voice as "Boy", and J. looked a little nervous most of the time. He still enjoyed it, probably because he rarely gets to go out with just the two of us. He kept saying "Let's talk about Barack Obama and John McCain!" and "Let's talk about the debate!" I think it was part of the fun of being out with the grown-ups. It was hard to keep a conversation about the debate going for long, but he tried.
The first picture we ever saw of J. (at three months old)

J. last month in Austin (we are so lucky to have this sweetie in our lives!):

Saturday, October 4, 2008

Potty Training

I don't want to jinx this, but I'm getting more serious about potty training, starting with B.
I put a portable DVD player on the edge of the bathtub, and let B. sit on the potty watching it. Yesterday he peed twice, and today even had a poop! I have to admit, only one of these events actually ended up going into the potty. But it was all very, very close to the toilet, and I'm seeing that as a big step in the right direction.

Unfortunately, due to the nature of life at our house, I end up leaving him alone sometimes, and when I return, things are not always good. I'll spare you the details, but I will say that the DVD player may not smell as nice as it once did.

I'm trying to tell myself that even if this is one of those blips of progress that disappears again for months, it means that someday this really will happen.

Tuesday, September 30, 2008




A friend of J's generously invited all three boys to her party at the Little Gym. It was so much fun, and completely exhausting. I brought along our sitter, and I don't think I would have survived it without her. I know the entire box of cupcakes would have hit the floor if she hadn't been there, courtesy of G. As it was, he only managed to take the birthday girl's cupcake right off her plate!

Each boy tried all the equipment. The twins actually seemed interested in Duck, Duck, Goose, and really went wild when they brought out the giant parachute. That was the most physically exhausting part for me, because B. wanted to be on or under the parachute at all the wrong times. Our sitter is only twenty, and she looked completely wiped out by the end. She asked me why they didn't provide caffeine for the adults I had a similar thought, but it was more along the lines of a nice glass of wine.

Saturday, September 27, 2008

Disaster Fatigue

"Disaster Fatigue" was a headline in the Austin paper while we were still there. People around here definitely have it.

The biggest problem for me right now is that every big intersection is a four-way stop (all the traffic lights were blown down). Very gradually, the lights are being fixed, but after days of making our way tentatively through four-way stop after four-way stop, Houston drivers are confused, and I think every one of us has stopped at a green light, or driven ahead at a red light. They even mentioned the phenomenon on the news.

I feel as if I could find some analogy for life with autism in this, if I had had more sleep. Or maybe not! If traffic lights are the biggest problem, things must be improving.

Wednesday, September 24, 2008

The Catalog that will make me rich, Part I

I keep saying I'm going to start a catalog for families of kids with autism. My catalog won't have any items to help you cure your child. The focus will be on getting your family through those tough days (and nights)

My ideas so far:

Self-Cleaning Mini-Van: Using a dishwasher style mechanism, this van will fill with hot water and detergent at 1:00 every night, swish around for twenty minutes, then drain and dry itself

Mini-Van Febreze Mist: Every time you lock the doors of your mini-van, a fine mist of Febreze is dispensed from the ceiling.

One-piece pajamas, available in any size (if you don't know why you would need these, thank your lucky stars)

Vitamin fortified Play-Doh, crayons and watercolor paints (for the extremely picky eater who for whatever reason loves to devour art supplies)

Sunday, September 21, 2008

Putting things back together


We're back in Houston, but things are not quite back to normal. Some things actually feel like an improvement. Everyone's fences are down, and neighbors wander from yard to yard, talking and helping each other out. Half of our neighborhood still doesn't have power, so we swap laundry, baby-sitting and chances to sit in an air-conditioned house.

The Little Gym near us opened up for free open-play sessions, so the twins finally got to experience gymnastics. We went two days in a row, which really helped out. School is out for another week, due to power outages and flooding.

The grocery store smells really, really bad (a little like our mini-van on occasion...think sour milk mixed with a couple of mystery smells). It is gradually getting re-stocked, and is very uncrowded. B. and I had a nice shopping trip today. B. is a real pleasure to shop with. He sits in the cart with a huge grin on his face.

We all feel so lucky that for us Ike has mostly been a long series of inconveniences. And a lot of really great moments, as guilty as I feel to admit it.
Here's one of the nice moments-- G. was trying his first ice cream cone:

Wednesday, September 17, 2008

No longer a vacation

Well, we are still here in Dripping Springs, and that vacation feeling has pretty much evaporated. Our power is still not on at home, and while Houston's water has been declared drinkable, our town's water is not.

On the upside:
Away from home, the twins are slightly more adventurous eaters: B. has eaten an apple and a banana, and chewed then spit out some PB and J.

what, what, what??! My husband just walked in and said a neighbor called to say our power is on. Hooray...I must go pack!

The family we are staying with are definitely getting a giant karma boost for everything they've done the past week. If for any reason Austin someday has to evacuate, and Houston is a safe haven, they will always have a place to go.

Tuesday, September 16, 2008

After Ike

Despite my cavalier attitude (aka denial), Ike was a real hurricane, as anyone who has a TV knows by now. Our house is okay, but we haven't returned due to lack of power, and now lack of good drinking water. Hopefully going home tomorrow. Everyone I've been in touch with came through okay, with just some damage to their homes. We are very grateful that our neighbors and friends didn't get hit too hard. I feel especially bad for those people who are just barely making it financially, and then get hit with this. Luckily, on the post-Katrina Gulf Coast, aid arrives a lot more quickly than it used to.

Friday, September 12, 2008

Mini-vacation

We had a dream of an evacuation--no traffic, beautiful weather, cactus and cattle-spotting for J.

Now we are safely ensconsed in the town of Dripping Springs, TX, outside of Austin. Deer wander through the backyard, hummingbirds buzz around the feeder, and "Mom to JBG" is more relaxed than I have been in months. G. is showing signs of home-sickness for the first time, but it comes and goes. The other two boys are in heaven.

This would all be a great vacation if I weren't worried about the people whose homes are right on the coast, and people who may not be able to evacuate. The storm is only a category 2, but for some reason it is causing a record-breaking storm surge. Our house was in a mandatory evacuation zone, but i don't expect it to flood.

Back to my mini-break, as Bridget Jones would say.

Wednesday, September 10, 2008

Evacuating

We are all packed, and planning to get up at 4 AM and leave. Hurrican Ike may not be too bad, and isn't aiming straight for Houston, but people are in moderate panic mode.

My sister is visiting from the Boston area, and has a pretty good attitude, considering that she's about to leave town in the wee hours with a family of five and a dog. The twins will probably love the whole trip, but J. is not happy when his routine is disrupted. The family we are going to see has a sixth grader, and I'm hoping he'll take J. under his wing.

I am going to bed and, I hope, sleep!

Tuesday, September 9, 2008

A little about B.


Today we had the little boy from next door over. B. seemed to be following him around somewhat. Then, three different times, B. picked up a paper hat that J. had made in Pre-K, and put it on the neighbor boy's head. He has never, ever done anything like this! After that he lost interest, but I keep thinking about it.

I feel so excited about this and I have to admit, I needed a pick-me-up in that department. Seeing the other kids in the twins' PPCD class, I am realizing how easily this type of thing would come to all those kids. In that class, the twins seem so, so far behind socially. But I try to remember how cuddly B. can be with adults, and how he'll look into my eyes and smile. I love him just as he is, but once in a while I get a jolt of reality when I see other kids, even kids with special needs. Can't think of any wise insight to end this post, but he is always the sweetest boy (along with his brothers) that I can imagine.

Saturday, September 6, 2008

Ordinary Life


I haven't been posting much. We've been having uneventful days, which is nice.

J. had a friend over to play this afternoon. They were acting out the "tractor-tipping" scene of the movie Cars (if an NT child can be said to perseverate, then J. definitely perseverates about Cars). G. was watching the two boys, which is very unusual in itself, and then he started to laugh and laugh. J. and his friend were running around, moo-ing, falling down, honking and generally doing the four-year-old boy thing. I was so happy to see G. laughing at them. He'll laugh at Baby Einstein puppets or Pingu the penguin, but never (before) actual kids.

We've been having other children over a lot lately, and I think I see enjoyment in both the twins' eyes. It's subtle, but it's real.

Friday, August 29, 2008

What's happening today:

- thinking about having a Gustav-inspired evacuation drill to our friends' house in Austin. It doesn't seem to be heading toward us, but we can't forget the 25-hour Rita evacuation nightmare.

- today the twins walked into and out of school under their own power (granted I did park in the handicapped spot, but it's still progress!)

-the para-professional is my new best buddy--walked us to the car, gave me details about their day, etc. Talked to the teacher briefly, but not enough. Must remedy this situation!

- J. seems to have a nice bunch of kids in his Pre-K class this year. Apparently his teacher had a very tough class last year and they are trying to give her a break. I'm glad that having J. in a class is considered a "break".

- most exciting of all: got to talk on the phone with one of my heroes, Susan Senator!

Thursday, August 28, 2008

School Days


This week the twins started PPCD on Mondays, Wednesdays and Fridays. Tuesdays and Thursdays are still ABA.

The teacher hasn't responded to my email or phone call asking how it's going...I think she's a little overwhelmed. She's very competent-seeming and warm in person.
So all we have to go on are the two words B. kept saying after his first day..."Careful!!" and "Shick!" We understand "careful" (B. is quite the climber and acrobat), but we are wondering about shick. We think there might be another final consonant sound. The paraprofessional looked as if she might cry after escorting the two of them to the front of the school where I pick them up. They are very good at flopping to the floor and staying completely limp when you try to coax them.

By Wednesday the school had decided I should park in a handicapped spot and come get the boys at their classroom. I had had visions of PPCD finally teaching them to walk well from place to place, but so far they actually walk better for me than for the teacher or aide. It's just the first week, so I still have high hopes for the walking thing.

I'm glad we are still doing ABA, so I mostly think of PPCD as a chance to be in a group of other kids. The other kids are so sweet, and for the most part pretty social, which I'm thrilled about. The special ed director wanted to bus them to another school with a smaller class, but I'm hoping this one will work out. I do think they need another aide. Right now it's seven children with one teacher and one aide (possibly the source of our new word, "shick"). I'm in constant communication with the special ed. director due to my stubborn-ness about keeping them in ABA. And to think that in some states the school districts actually provides ABA! It's as if we were in another decade from the east coast. I send all my communications in bulleted-lists, trying to make the impression that I'm a parent who has a lawyer on retainer. At the same time I try to be diplomatic, because I might actually want to teach in this district again.

I'm being paged by J. to lie down and help him sleep. Tomorrow is his Pre-K meet=the-teacher day, and he's got a bit of the jitters.

Hopeing PPCD will turn out to be helpful. But why hasn't the teacher returned my email or phone call. Tomorrow I am dropping them off at the classroom door, and I'm going to ask her to call me. Now I'm off to snuggle with J.

Tuesday, August 19, 2008

Companies that have saved my tushy

I usually save my product testimonials for Signing Time, but today I have two other companies I need to thank:

Essential Whites (makers of size 4T onesies)

and

CARES airplane harnesses

The first company has helped my guys make it through the night in a diaper and also helps G. keeps his hands out of his pants, all day long. Sorry to be so blunt, but it was really getting to be a problem.

The second company has helped us on our flights to New York. We are officially growing out of them at this point, but they worked great while it lasted.

I may add some cute pictures at a later time!

Saturday, August 16, 2008

Vacation Pics




My husband is en route to Iceland, school is about to start, and I'm thinking fondly of our vacation.

(apologies to my sister for posting a picture of her eating, but it's just so sweet)

Thursday, July 31, 2008

Mission Accomplished

We are back, and it all went well. There is one Hertz mini-van that will never be quite the same, and one seat on a 737 (D30, to be exact) which had to be "swapped out", but the whole family is thriving.

J. got to catch fireflies, the twins swam in freezing cold NY water, everyone rode on the Bear Mountain carousel and a good time was had by all. My father-in-law was briefly back in the hospital, but is now in the nursing home and hoping to go home in a week or so.

Wednesday, July 23, 2008

Taking to the air again!

Tomorrow we;re doing it again: flying from Texas to New York. We have a laptop, a portable DVD player and an iPod, so I'm hopeful that the flight will go smoothly. The hardest time is sitting in our seats, waiting for the plane to get moving. I bought out the Baby-Einstein themed chew toys at Target for B. For G., I printed out pictures of the Wiggles, Barney, Pingu, Bob the Builder and a few other characters and covered them with packing-tape (poor man's lamination). J. should be fine with Spiderman, Batman and a contingent of ocean animals. Judging from last time, my role will be crawling around on the floor of the plane, retrieving things.

My father-in-law recently had surgery for intestinal cancer, and is recovering in a nursing home. We are hoping to cheer him up with our energetic (chaotic) presence. G. is in an interesting period-- he does not want to pee or poop in a diaper, but has zero interest in the potty. Our carpet is not doing well. My mother-in-law has had four kids and a bunch of grandkids, so she's already seen it all, I'm hoping.

We're going to meet up with my parents at a state park for a picnic one day. I can't wait! Last time I talked to them they had been on a tour of a retirement village, the kind which includes assisted living and a nursing home. My dad was concerned that there was nowhere to store his canoes and bicycles. Things are always changing, and I am still focusing on appreciating each day and its little miracles.

Monday, July 14, 2008

Time for the Happy Dance!

From Saturday til today, G. has

- hugged J. spontaneously

- pulled J. up from the floor by the hand

- taken J. by both hands and done a little "circle dance" (twice)

It makes tears come to my eyes just to type this.

G. looks very serious in this clip, but I suppose he's way out of his comfort zone!
video

Thursday, July 3, 2008

Staying Busy


Overall, we are having a great summer in terms of progress...G. is using phrases, and repeating a lot of what he hears. B. is using more and more single words to make requests, and singing snatches of songs. Both of them have been more engaged than they had been six months ago (this always comes and go...the going still has the power to put me in a tailspin!)

J. can pedal his bike, has new friends next door and is learning by leaps and bounds.

This may go along with the language progress, but we are having more problems with kids "getting into things". It's mostly B., and it's mostly getting into the bathroom, to be specific. In the last three days I have found him sitting on the edge of the toilet with his feet in the water, another time on the counter with his feet in the sink, and (this is a new one), standing in the bathroom sink, looking in the mirror. Of course, the simple answer is to keep the bathroom closed, but in our house we don't always manage it (think four year old brother, and forty-something scatter-brained mom).

He is also very interested in toothpaste, toothbrushes, markers, pens, and crayons, and any container of liquid he can get his hands on. I was chatting with a neighbor the other day, and B. lay down on his tummy to drink out of a puddle.

In the blogs I read, I don't notice a lot of descriptions of these kinds of escapades. I'm sure they must be going on in many homes, but maybe those moms have trouble getting to the computer to blog.

Most of the time, B. is just so darned cute that these things seem funny (although the germiness factor is troubling). If any of the three or so people who read this blog have been through this stage and come out the other side, I'd love to hear about it!

Thursday, June 19, 2008

On the town


Last Saturday we attended a party for a friend's son. He is also on the spectrum, although more mildly affected than our guys. He has just started talking, and it was great to hear him spouting out words all afternoon.

I'd say our family livened up the party: the only two instances of nudity were thanks to us (and one of those was J) Once he was dressed again, G. spent most of the time with the Leapfrog letters which were on the fridge (and the floor eventually).

For the first time I can remember, B. recognized a cake, and let us know he wanted some by saying "cake" very clearly. He also ate with a spoon (!) until my back was turned at which point he attacked a piece with his hands.
This is me trying to contain him as the cake is cut:

J. did a great job the whole time. The next day (Father's Day), J. and his dad bonded over Lego for hours. They built a Mars rover together, and played with it endlessly, like two peas in a pod.

Thursday, June 12, 2008

About that last picture...

I just wanted to clarify that in the picture below, B. is standing on his head and resting his foot on the chair. It might look as if he's falling onto his head, and I don't want you to think I'd post a picture of that!

Both he and G. have been seeking deep pressure to their heads lately. B. comes up with inventive ways to do it himself. G. comes up to me and rubs his head and whimpers, and then I give him some head rubs and he's happy.

Also, B said his first original (almost, it was prompted) two word phrase: "want cookie"!! And yesterday in Toys R Us he sang the entire Wonder Pets theme!

Monday, June 9, 2008

Summertime



A few posts ago I mentioned the feeling that we were flunking out of ABA. Despite the stated plan to work only on eye contact and pointing, we are still chugging along and making some progress.

At home, G. is always saying new phrases, and B. is babbling and singing all day long. J. is interested in Kung Fu Panda (a movie I hope he doesn't see for a few years!) He can't remember the name and calls it various things. My favorite was "Punch Fruit Panda".

J. is also interested in Knock Knock jokes. He can successfully tell the "Dwayne the bathtub I'm drowning" one, but his other favorite is

Knock Knock
Who's there?
Knock Knock
Who's there?

Repeated numerous times, and finally ending with

Knock knock
Who's there?
Orange you glad I didn't say banana?

Thursday, June 5, 2008

Back at home


The trip to Rhode Island went well. All my worries were for naught, although there was one phone call home when my husband sounded like he might either cry or fall asleep at any second.

Block Island was beautiful, my friends were as funny and relaxing as always, and I hope we will do it all again next year. It was the strangest feeling to be able to sit around, with a glass of wine in my hand and just chat.

B. actually expressed the most emotion about my being home. He sat in my lap and gave me a long list of his grievances, or that's what it sounded like he was doing. Several times the first evening I was home, he started to cry and wasn't happy unless I held him. All three boys looked taller than I remembered them, and J. seemed to have matured in the five days I was gone.

It was good for me to find out that the family can survive without me for five and a half days. And it is very, very, very good to be home!

The "chicas con sombreros", exhausted but happy, waiting for our ferry:

Tuesday, May 27, 2008

Two Days til the Big Trip


Two days to go...I'm almost ready to leave for my "Broads' Retreat" on Block Island. I am so nervous about leaving the boys, but so, so, so ready to see my old friends and have "girl time". we haven't gone away since the year before we adopted J., so we are very overdue.

My sister is here, learning the ropes. (Thank you a million times, Sis). My little Sister will actually be on the retreat.

We are in the grip of a serious alphabet obsession, so I leave you with one of my favorite phonics videos from the PBS show "Between the Lions". It takes me back to the music of my college years.

Sloppy Pop

Tuesday, May 20, 2008

Applied Behavioral What?



I was going to call this post "Flunking out of ABA", but it was tongue in cheek, and I don't feel all that glum about it.

After a surge in imitating words from B., ABA hasn't yielded many noticeable results lately. Outside of ABA, both boys are doing well. G. is using little phrases here and there ("come on, Mom", "My turn", etc) The phrases are echoed from DVD's, but he uses them appropriately! He was in a phase of reciting entire Backyardigans episodes, mostly in his own jargon. That was getting old, but he seems to be moving out of it.

B. is progressing in his own way, at his own pace. He knows what he wants more than he used to, and he notices other kids more, and he is great about being affectionate.

Now to the flunking out of ABA part. G. has had them stumped from the beginning. G. knows his letters, numbers, colors, shapes and so on, but he was not going to do a thing for the ABA therapists. Nada. Every week, the head therapist would tell me some new approach they were trying with him, to the point that we joked about it at home. B. tries hard, but imitation is not his thing right now(oh, those mirror neurons!), so he has them stumped, too.
Lately the ABA center keeps scaling back on what they are working on with both boys. Each week they cut back on something. Last week they decided not to work on motor imitation anymore because they are "not ready" for it (fine with me, it was just stressing them out). Then they decided not to focus on fine motor skills. Okay. Today they said they are going to try to make them "feel successful" and really reinforce eye contact and pointing. For three hours? That's a lot of eye contact and pointing.

The therapists themselves are wonderful and warm. But I have to say, I don't know how long we are going to stick with this G. learns things on his own, no matter what we do. B. has definitely gotten something out of the ABA, so I'm more willing to send him for longer.
I'm formulating some questions for the lead therapist, but deep down I'm relieved that ABA is not the be-all and end-all for us. For whatever reason, the twins learn more by playing at home than they do at any therapy we've tried. We do a mix of sensory integration, hanging out, being silly, going to playgrounds, watching movies and goofing off. We eat a lot of gluten and casein. And starting in the fall...preschool. We are going through with it this time! Really, I mean it.

I'm glad we are giving the ABA a try, and I think we'll stick with it through the summer. Part of each week, and the rest of it will be the usual summertime business.

Thursday, May 8, 2008

Alphabetical order, hoopdeedoo style

G. loves to name the letters, but had never tried to put them in order. Here's his first shot (It starts in the middle, goes right, then left, and then skips back to the far right):


And one more sleeping picture, this time with the dog.


You can see from these photos that even when your only criterion for choosing a carpet is dirt-hiding capability, you can only do so much. :)

Sunday, May 4, 2008

J goes into business



Won't even try to explain my lack of blogging...

Ever since a family with five kids moved in next door, J's life has changed. He's over there, they are over here, we're all playing in the front yard (only possible when one twin is asleep or I have an extra grown up). J. is in heaven.

Today he has spent the entire day helping them sell lemonade, and he cannot stop smiiing.

Wednesday, April 2, 2008

Knock on Wood


I feel superstitious about blogging this...is it real?

B. is having a mini language explosion. He is using words to ask for things, usually repeating what he has just heard, but also saying things spontaneously, some of the time. In the past he has sporadically come out with surprising things ("kite!", "clothes", "boy" and so on). This is much more consistent, and he is saying the words to us, rather than to himself.

He's excited about his new powers, and wants to be able to do more. He'll come up to me and "talk" in a perfect imitation of the dog from Blue's Clues. I talk back to him the same way, and we have happy little exchanges with all the intonation of English, but no actual words.

Sending out a big thank you to the universe!

Wednesday, March 19, 2008

Thinking about Exhaling




At the twins' eighteen month check-up, a little light went off in my head which said "autism". The first month after realizing this was the hardest, partly because no one believed me. Feeling sure that I was right, I went into a flurry of researching, reading, and generally freaking out. By the time they turned two, no one tried to argue. The last year and a half or so, i've often thought of my state of mind as "waiting to exhale" The phrase comes from the novel by Terry McMillan, which I read in the early nineties. My life is so different from the women in her novel, but the title exactly fit the feeling I had.

For the first year, I threw myself into Floortime, combined with what I could figure out about Sensory Integration. I put all kinds of pressure on myself (and the rest of the family), trying to create "circles of interaction". G. seemed to respond, and B. remained ever-cheerful and pretty much happily self-absorbed. Finding the Signing Time DVD series jump-started our communication, and gave me more hope, but I was still worried and driven.

That whole time, I never relaxed, never stopped spending every day wondering if I was interacting enough, engaging them enough, should I be doing GFCF, etc. I'm still this way, some of the time, but I feel...like I'm thinking about exhaling.

I don't know if it's turning three or starting at the new ABA center, but the twins are changing. G. is talking and making connections (he looked at a little CD player, glanced at me and asked "Telephone?" B. is showing interest in activities (coloring, painting, looking at books), and is repeating all sorts of words to get what he wants. More importantly, he is seeking us out for attention (which he used to do a couple of years ago). In G., it's a speeding-up of his usual learning style. In B. it's sometimes a subtle change, but a really, really nice one.

The twins have always been sweet and wonderful. And now it's great to have the experience of "When did he start doing that??" with them--that feeling of realizing they are growing up, and you don't know if you are ready. I feel it all the time with J., and now I'm beginning to think it about all three of them.

Friday, February 22, 2008

Moving right along


Haven't been posting because I've been interacting with live people (grown-ups, specifically) more than usual. Can't seem to fit both the blogosphere and real-live adults into my life at the same time!

I'm feeling very good about keeping the twins home. They are still doing ABA and OT. G. is taking off with language, and is seriously obsessed with letters, numbers and colors.

B. has been saying some new words ("cook" is one of them, which makes no sense in this household, unless he's suggesting that I try it sometime) Also "ice cream", a word everyone should learn as early as possible. Today I was trying to get him to say "baby" to request a Baby Einstein DVD, and he said "Signing Time". That one knocked my socks off.

J. is very, very interested in Spiderman, although he still secretly likes Disney princesses. He is trying to write his name, which is fun. He is also determined to get the twins to play with him. He can get them to laugh, by lying on them and putting his face right up to theirs.

Tuesday, February 5, 2008

Keeping my Boys at Home a little longer


The last few weeks I've been having trouble sleeping, feeling uneasy without a real reason, knowing something was bothering me.

Last Thursday, as I walked the dog through the dark neighborhood, i admitted what was wrong. i didn't feel right about sending the twins to preschool. It came down to the ratio--one teacher and one aide to work with seven boys with autism. I like the teacher, I liked the IEP goals, but I don't think those numbers make sense. Therapists who work with my boys individually sometimes seem "challenged"!

Once I knew what was wrong, I knew what I had to do. It was embarrassing calling on a Friday to say that the twins wouldn't be starting on Monday, but who cares? If I learned anything from all these evaluations, and therapies, it's that my gut instincts are usually right.

We are going to get a few more ABA hours each week and hopefully a second OT session, but mostly things will stay the same. I get to be with my sweet boys, and I'm going to enjoy every minute of it.

Tuesday, January 29, 2008

An Artist among Us



B. discovered his medium yesterday...he likes to work in watercolors. Over the past couple years I've tried getting him to paint every once in a while, to no avail. But yesterday he loved it.

He also said "paint" and, I think, "painting" several times. And when I tried to put things away as it started to rain, he said a very clear "NO!"

I'm hoping the paints really are truly non-toxic, because most of the time he had one brush in his mouth, and he drank part of a cup of the painting water.

Wednesday, January 23, 2008

Tubby little cubby all stuffed with fluff

About a year ago, B. was in a stage when he would complete the lines of some familiar songs..."Old McDonald had a ...", and a few others. I used to love hearing his voice sing those words. I didn't like to push it too much, but it was so nice to hear the sound of his voice. He doesn't fill in words as much as he used to, only once in a blue moon.

Every night lately, the boys have been listening to songs from Winnie the Pooh movies, sung by Carly Simon, as they fall asleep. Usually we play it several times before they actually go to sleep. This morning, B. was upset about something, and I started singing Winnie the Pooh to him. A few minutes later I recognized him singing "Winnie the Pooh, Winnie the Pooh" a few times. It sounded like "Weee ah pooh". And this afternoon he sang some syllables that sounded like "tubby little cubby". This was all very faint and garbled, but so wonderful to hear.

When I hear him singing a string of words, it makes me wonder what it will be like to hear him speak in phrases or sentences. I believe it will happen, in its own time. Meanwhile I enjoy the singing and babbling and whatever else he has to say.

Sunday, January 20, 2008

Reason to party


I'm making a concerted effort to get out more with the boys. Last night we went to our neighbors' housewarming, and after some initial ear-plugging and wailing, all the boys had a good time. Our neighbor's youngest daughter has developmental delays, and is exactly the twins' age. They are also big "Signing Time" fans, and it was nice to have some other signers around.

This evening I brought J and G. to a church-related pot-luck. B. was asleep when I left, so he stayed and watched an important football game with Dad. I had to force myself to go, and the group is not quite what I'm looking for, but I'm glad I went for the boys' sake. Ideally I'll find a group that I like for my own sake and that's also good for them So far the autism groups I belong to come closest, but they don't get together often. I want a place where I can really be myself (goofy, combined with sarcasm and liberal views) But, I digress.

G. preferred staying downstairs with the grown-ups for most of the party, which was fine. He counted things, played with toys (!) and generally had a good time exploring. At dinner, he sat at the kids' table with no protest, and I wished I had my camera--he looked so mature. And next time he may even eat something more than a frozen waffle.

And now for my favorite moment:
All of us adults were lingering over dessert when G. climbed into a chair across from me and sat down. He looked at a lit candle for a little while, and announced "Birthday!"

I'm so happy about this, I can't describe it. I don't know exactly what it is, but I feel like he's moving to a new kind of thinking--making connections between things and events. It's so exciting to watch.

Friday, January 18, 2008

Bumpy Landing


On our flight up to Newark, we had the most frightening flying experience I've ever had (for the record, I'm not scared of flying. I can't stand it when people say "it's so much safer than driving" because I have an actual phobia of driving fast) We had had a great flight, and were making the descent into Newark when the plane pulled up sharply, and continued flying. The pilot made an announcement that the instruments indicated that the nose gear was not coming down. He said something vague about having someone check it out.

I immediately got a very bad feeling in my stomach. I looked at my husband, and he said, "Oh, we can land without nose gear! We'll just have to get out the emergency exit fast". My husband has always taken a sunnier view of things (he is still certain the twins will grow out of their autism), but I can't say I was convinced.

The plane started making a grinding sort of noise, which my husband guessed was the pilot trying to "shake the landing gear down". That's when I decided he probably wasn't lying to me to calm me down, or else he was doing a bad job at it. I buckled the twins into their harnesses, but my hands were shaking, and a neighbor across the aisle had to help me. After a while, maybe ten minutes, of me thinking some pretty grim thoughts, the pilot announced that everything was okay. I was still nervous until we got down, and the actual landing was pretty bumpy. As we looked around, we saw fire engines and ambulances standing by. This seemed dramatic to me, but as my sister says, "If they haven't sprayed foam on the runway, they aren't expecting the worst".

I'd like to think I gained some wisdom and perspective in those shaky moments, but the most I've taken from it is a desire to appreciate every moment, stop worrying so much about the future, and stop worrying so much what other people think. All cliches I suppose, but cliches because they are all things worth doing.

And above all, look at my boys every day and be simply happy.

Thursday, January 10, 2008

Trying some new things


We started with new ABA therapists last week, six hours per week for each boy. There's a clinic about fifteen minutes from our house which uses a Verbal Behavior approach, and had been recommended by some parents in our Meet-up Group. So far, B. ssems to love it, and G. is okay with it.

I was dreading the first few days, because I've seen a pattern where therapists have seemed to be angry with G., because they know he knows a lot, but he won't do anything for them. It drove me nuts both times, but I tolerated it, because things got better once G. got to know each therapist.

At this place, it's completely different. The therapist is so sympathetic to G. He tells me, "No one should be forcing him to do anything. Right now we'll just play together and earn his trust". Of course, this is how everyone should have approached G. I feel so much better about this man. G. has enough anxiety without pushy therapists trying to force him to perform. I don't even know if I think ABA is right for G., but at this clinic, I think they understand him.

I don't know if it has to do with the new clinic, but B. is down-right chatty, by his standards. He counts to ten, sings "Tinkle, tinkle, ya, ya, ya" and murmurs the alphabet under his breath. It's mostly for his own entertainment, but I'm fine with that.

One thing that's a definite improvement in our quality of life: we have zero therapists coming to our house and driving J. nuts with jealousy. I liked the ECI women, but I don't miss rushing home for thirty minutes of "developmental services". Now J. and I have two mornings a week to spend together, and I can see him relaxing and acting happier.

PS the picture above is J. wrestling with his cousin. They played together for four days straight over the holidays.

Wednesday, January 2, 2008

Wordless Wednesday

My brother-in-law and nephew did some fidddling for us, while B. danced.