To ABA or not to ABA?

In the last few months before we quit ABA, our insurance suddenly deigned to cover a fraction of it. Now the therapy center is asking us if we'd like to come back for some hours this summer. Ahhh, the joy of deciding how much and what therapy to get!

To be honest, I haven't seen any big regressions since we quit ABA. Also, the twins qualified for 18 days of Extended Year Services (that's the most you can get, so I am happily surprised). Right now, there isn't even a little part of me that wants to take them back to the ABA center although I do miss the therapists. Am I denying them something that might help them? My gut says no, but who knows?

The alternative summer plan:
They will be getting many, many hours of aquatic therapy (aka floating around in the neighborhood pool with Mom). Also ample opportunity to use technical interfaces (IPad), and various community outings (Target, Walmart, Kroger). They will have access to an embarrassingly large library of children's books (my shopping weakness) and opportunities for play in inclusive groups (the neighbors' children and their big brother). We will be working on trying new foods, using the toilet (God willing) and staying clothed.

Even to myself I sound defensive, but we'll see how it goes.

Keys to the Universe, a la Susan Senator

In homage to Susan Senator's occasional lists of what really makes her happy, here are some of my keys to the universe:

1. a planned trip to see my parents, my sisters, my nephew and my dog-nephews

2. newly-discovered Chai tea bags

3. watching 30 Rock DVD's with my husband after all the boys are in bed

4. watching Dancing with the Stars with my oldest son

5. spring rolls from Pho 21

6. painting the bathroom with the radio cranked up

7. walking on the abandoned golf course in our neighborhood

8. going swimming with B. and watching him teach himself to swim

9. sitting out on the deck after dark while G. marches around singing his Christmas song medley

That is a very satisfying exercise. It's a good antidote to compulsively going over my worries in my head! I am going to make these lists more often.

B gets lost...and how to trust that it won't happen again?

This Monday we went on a field trip to the Houston Zoo. It was a beautiful day, and we had a great time (although the twins aren't at the point of being very interested in the actual animals yet).

At the very end, in a huge crowd of Houston schoolchildren waiting for buses, a paraprofessional spaced out, and Brendan disappeared. I had G., and I walked up to the group of aides, and asked, "Where's B.?" They hadn't noticed he wasn't there. Next came fifteen minutes of running around like a mad woman, asking the zoo officials to close the zoo gates, and saying to random people, "If you see an autistic-looking boy in a blue shirt, grab him". The teacher had stayed back at the school, so I had to take charge of the situation.

Despite all these years of private therapy, public education, etc., the twins have no sense of danger, and no sense of the need to stay with a group. They might respond to their names in a quiet setting, but definitely not outdoors in a crowd. Luckily, a para found him standing in the gift shop. We still don't know exactly how it happened--he was sitting in a wagon, and the para thought he was buckled in.

Today we are going on another field trip, to a boardwalk, which is right next to Galveston Bay. I almost stayed home with both of them, but I can't keep them home from everything. Letting my guys go off to school, on trips, etc. requires so much trust of people I don't really know very well. I don't know how to balance worry/caution with trust. It's written into both boys' IEP's that they will run off, and I'm trying to think of other precautions we could take (including getting B. a service dog). With J., their big brother, I don't have any of these concerns. I need to find a way of trusting in aides, teachers and fate more than I do right now.

On the other hand...

J. had a different friend over the other day, and i was appalled! B. was sitting in a chair on the deck, looking around at the trees, as he often does. I overheard our neighbor's son saying, "He's so boring!" J. just laughed nervously. Then the little boy said, "Make him scream again!" I think he was talking about the happy shouts that B. tends to make when he's jumping around the house. J. was at a loss and just looked at me. I was so disappointed in this boy's attitude, but I tried to think to myself that he's nervous around B., and doesn't understand what's going on. So I did my best to explain autism in a few sentences, but I couldn't tell if it made much impression. I was so annoyed by the whole interaction. I don't know the boy's parents well, but I know the dad is always very kind toward the twins, and invited us to join a camping group he's in. I think I'll ask the dad to talk to his son about it.

Afterward I talked with J., and said there will always be some kids who don't know much about autism, and if he wants, I'll explain things to any of his friends. J. seemed much less concerned about it than I was. Looking back, I'm realizing that the rest of J's friends are amazingly accepting about the twins. Our next door neighbors have a daughter with developmental delays, so between our two houses there's a lot of happy shouting, partially-clad escape attempts, and toilet-training mayhem. To live on our street is to have at least some understanding of six year olds with special needs!

I think it was good to have a wake up call that there will be rude questions and clueless comments from kids J's age, and I need to think up some strategies to deal with them. To me the twins are so adorable, I can't imagine anyone saying anything mean about them, but it is going to happen.

Thanks for noticing

J., my oldest son, had a friend sleep over last night. His friend is an only child and is always surprised by the reality of our household. With the candor of a seven-year-old, he has suggested a few times that I clean up the house more often. He also reports the twins' escapades to me in a panick=y voice at frequent intervals. It's usually along the lines of "B. is naked!", "G. is on the kitchen counter!" or "B. is jumping on the IPad!". Actually those are all actual quotes from last night.

This morning, while B. and my husband were still sleeping, I took J, G and J's friend out to the kolache and donut shop. We got our treats and sat at a table to eat. After we'd been there a while, J's friend said, "Hey, Greg is doing really well!"

That warmed my heart so much. For one thing, J's friend is getting some perspective on the whole situation. And, he was right, G. was doing really well.

Potty Training Update

Well, apparently I am backing off on the potty training once again. Although we were focusing on G., it was B. who made some improvement. G. just became stressed, aggressive, and started saying, "Sleep? Sleep?" in the middle of the afternoon, hoping I'd put a pull-up on him and put him to bed.

I know that some day, G will use the bathroom. He can wait hours and hours, he can ask for what he needs and he can go when he decides he's ready. We just need to change the location of where he likes to go or actually, HE needs to change the location of where he likes to go.

On a related note, a Hoover SteamVac should be arriving at our house in 3 to 5 business days, and boy is it going to be busy!

Galveston

Since our first family beach trip last year, we've resolved to go down more often, especially in the off times. No one in our family likes a big crowd, but we all love the surf and an empty-as-possible beach. So, this past Saturday we packed up and headed back down to Galveston.

If you are used to New England beaches, it's a bit of an adjustment. To me it doesn't seem as clean, and there's no zoning, so the development on Galveston isn't exactly quaint or charming. On the other hand, you find a nice cross-section of the local poplulation on the beach, with a fun, multi-lingual, multi-cultural feel.

It was very grey and very windy. The boys loved the waves, which seemed a lot bigger than usual. Afterwards we went out to Mooyah Burger, which everybody liked or tolerated really well. When we go out and have such a normal family day, it's a really great feeling.