October 13, 2009

ABA Has Begun

Week two of the intensive home ABA program has begun. I'd say it is going well so far, though it has disrupted all of our routines. Jelly Belly is, at least for now, just as happy at home as she is when we're out, and Jeff is able to come home for lunch one day a week so I can continue to take her to our music class. Berkeley is, for the most part, being fairly well behaved (outside of the barking every time anyone comes and goes). She has been getting lots of treats and new things to chew on, while I try to keep her out of the way. I have been filling my days with the things required to run a house: laundry, dishes, and shopping - I mean, research on the internet. I'm reading, finishing up a needlepoint I started before Moe was born, and setting up my sewing station. I haven't yet sewn anything, but the sewing area looks pretty inviting.

In many ways, things aren't that different for Moe than they would be for any other two year old. He gets up and has breakfast, plays for a couple of hours, has a snack, plays some more, eats lunch, takes a nap, has a snack and plays some more. Then it's dinner, bathtime and off to bed. Having people in and out of the house all day is strange and a little uncomfortable for me, but right now Moe just gets a new playmate every few hours.

The first couple of weeks of therapy are considered "pairing." The therapists get to know Moe and he gets to know them. They are working with him, but haven't been pushing too hard. This week, he is also being formally evaluated on a number of skills which should set a baseline for tracking progress. Friday, we have our first "clinic," a meeting of the entire team, including us, the program director and supervisor, and all of the therapists. I think this is where we start to design the formal programs that we will all be working on with Moe.

So far, I like that the program feels like play. The therapists use a developmentally based approach, which can be worked into our everyday lives. I'm learning good techniques from the therapists and I think the program will be good for Moe. I'm a little concerned that he doesn't have any interaction with other kids most days, but as the program progresses, we can add in social and playgroups that are also run out of the center that manages the ABA.

I've also started reading a great book called Overcoming Autism, co-authored by Lynn Kern Koegel, one of the founders of Pivotal Response Training. Dr. S had recommended PRT for Moe, and this program, though not strictly PRT, uses a similar approach techniques, from what I understand. We all have a lot to learn, but I'm feeling good that we are headed down what feels like the right road.

October 5, 2009

How about them apples?

This has been a tough few days for Moe. He's finally getting his last two top molars and he has a little bit of a cold. He's been waking up very grumpy. I understand his frustration, but when he's grumpy, I'm grumpy. It's been challenging.

Yesterday, Moe woke up pretty much hysterical. He was frustrated and clearly trying to say something. Apple? Yes, he's saying apple! Okay, so I run to get the applesauce. Nope, not it. More frustration, more hysterical crying. Now he's saying something else. "I want?" I have thought that he's tried to say that in the past, but was never sure. At school, they have been working with him on saying whatever it is that he wants ("more," "cracker," "apple," etc.), but just the label, or sometimes even eye contact, is enough for him to get it. The more verbal kids, however, have to say "I want." Now, Moe may often seem tuned out, but he picks up a lot and often surprises me with what he knows. So he's crying hysterically, saying "I want (sniff, sniff, cry, cry) I want!" And then, he looks right at me and says "I want apple!"

Oh. My. God. Moe just: 1. Said a full sentence, and 2. Told me what he wanted. HUGE!

Now I panic. I don't have any apples, and he didn't want the applesauce, which is what he usually means by "apple." Then I remembered I had bought some packages of freeze dried apple slices that I sent with him to school last week. Moe ate two entire packages.

October 3, 2009


In the English language, words often have multiple meanings. Take the word "anxious." There's anxious, like "anxiety." As in, "I'm anxious about my upcoming surgery." Then there's the anxiety that connotes a restless excitement, as in "I'm anxiously awaiting my upcoming trip to the Bahamas." (Or in my case, this week's episode of Mad Men.) This duality of meaning has never made much sense to me before. But right now, I get it.

We start Moe's in-home therapy session next week. His daily schedule looks like this:

8:00-10:00 Therapy Session 1
10:30-12:30 Therapy Session 2
12:30-3:30 Lunch, break, nap
3:30-5:30 Therapy Session 3 (some days)

Plus an extra session two days a week for OT and speech.

I'm anxious about having people coming in and out of the house all day. How will it impact us? I already cringe whenever the doorbell rings because our dog goes insane. Is it going to be like that every time or will she start to get used to it? Am I going to spend all day, corralling the damn dog to make sure she's out of the way?

I'm anxious about how hard Moe is going to be working. Will he still be the fun-loving kid he is now? Or will we somehow break his spirit? Are we doing the right thing pulling him out of the center based program he is finally used to? How will ever get to socialize with other kids?

I'm anxious about my own well being. I'm going to be stuck at home a lot. Will I ever get out? It is so much harder to run errands with both kids. What am I going to do at home all day long?

I realize I'm just dreading the unknown. Of course, we'll work everything out. I'm hiring a dog walker. Moe will still be himself, charming all of the therapists with his giggles. We'll go to playdates on lighter days and I'll find a hobby or two. Maybe start cooking things that take longer than 30 minutes.

Mostly, though, I'm anxious (the excited kind) to see all the wonderful progress I know Moe is going to make. As Moe's final report from the center said "He is moving in the right direction. Hooray for Moe!"

October 1, 2009

Five months

Heads-up: this post isn't about autism. It isn't much about Moe at all, but it is what I'm feeling today, so I'm going with it. It is about breastfeeding, so if you don't want to read about that, I suggest you stop here.

When Moe was born, he wasn't a good nurser. He wasn't quite full term and was a very sleepy guy. Plus, I had no idea what I was doing. So breastfeeding was stressful, though I put a lot of pressure on myself to keep going. The plus side to this, however, was that he took a bottle right from the start. We started with one bottle at night of pumped milk. As time went on, that bottle became formula. Then I added a second bottle of formula during the day. With each bottle I added, I felt a sense of freedom and relief. I loved watching those ounces drain away, not having to guess how much my little guy was taking in. I stopped breastfeeding at about 4 1/2 months.

Jelly Belly, on the other hand, nursed like a champ. From the first time we tried, she latched right on. There were a few days where it was a little painful getting started, but after that, it was the easiest and most natural thing in the world. And this time I had the benefit of experience. So I planned two things. First, I would not pump. Second, we would introduce a bottle right away so Jeff could help feed her at night. Well, you know what they say about plans. I didn't ever pump. But Jelly would not take a bottle. We tried and tried, but she just didn't want it. Occasionally, she would take an ounce, but never more.

This hasn't been that much of a problem, but I'm going out of town for a weekend in October without the kids, and Jeff needs to be able to feed the baby. So last week, I decided I would start bottle feeding Jelly during the day. I figured if she was hungry enough, she would eventually eat. My plan was to feed her with a bottle during the day and then nurse for the night time feedings. (She's a really good sleeper and I didn't want to mess with bed time!) It worked like a charm. Unfortunately, it seems to be all or nothing with this girl. Now she doesn't want to nurse at all anymore.

I'm feeling a little bad about this. I tried to have one last time with her, to say goodbye to the experience. But she wouldn't take it. So I guess we're done. Although it is a little sooner than I had planned (there's that "p" word again), I'm okay with this, but a little sad. We aren't going to have any more kids, so this phase of my life is over. While I was pregnant, and then breastfeeding, I had this sense that my body was doing the thing that it was actually created to do. I am happy to be gaining back some independence, but it is hard to give up the one thing that only I could provide to Jelly.

As Jelly outgrows her clothes, I am happy to have the garage space back, but sad to see those cute little outfits go. As she learns to sleep through the night, I am ecstatic to know I'll be getting sleep again (most nights), but missing our quiet moonlight strolls down the hall. It's going by so much faster this time. I'm less nervous, but more distracted. I have to remind myself to take it all every day because as challenging as these early days can be, it is the last time I get to have them.


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