As 2011 drew to a close last night, Stephanie and I were reflecting upon it and especially how it had gone for Sophie. Basically, she made remarkable progress. I've documented a bunch of it here. It's a lot and mostly for myself, but I thought others might be interested in a year-end recap as well. But first I have to back up to the year before last.
2010 was very hard for us because after Sophie passed age 2, we had to come to face the fact that she was not catching up like she should and that, in fact, something else may be wrong with her. Specifically, Stephanie heard a public service announcement about warning signs for autism, and Sophie met a bunch of them, like tip-toe walking and lack of speech. We had a bunch of testing done and found that she did indeed fall on the mild to moderate end of the autism spectrum--technically Pervasive Developmental Delay, Not Otherwise Specified (PDD-NOS).
I can't begin to tell you how hard this was on Stephanie and I. That summer and fall we were constantly up and down emotionally. But we also formulated a plan, lined up a good occupational therapist, found a great school for kids with autism, and heard of a doctor doing a protocol that sounded promising. It took a few months to get all that going, but by September 2010, she was in the new school and had seen the new doctor and started some new medicines. Over the next few months, we started to see improvements.
Which brings me finally to 2011. At her 3rd birthday, Sophie still didn't have any speech. But this is not to say she didn't have language. She was still doing sign language, and had also started using a program on the ipad that helps people without speech communicate. A month or so after turning 3, she started talking a few words. It was slow going, but she kept adding some new sounds and could say a few things, mostly words with lots of consonants and soft vowels. For example, she could say "becca" for Rebecca. But sounds like long "i" and "e" she couldn't do.
Around July, we realized she could not only form some letters, but could read easy words. Her teacher tested her reading at a first grade level. But her academic skills, like identifying letters, colors, numbers, have always been strong, it's social skills that she lacks. She is perfectly happy to play alone all day, even at a playground full of other kids. Her new doctor kept telling us that as the medicines helped her, she was starting to develop again, but had sort of been stuck at around 18mos-2years, and now she was picking up there. He also told us that the best thing for her would be to be around other "typical" kids as much as possible, especially those developmentally on par with her.
Stephanie and I decided that the best thing for her would be to put her in a new school for the fall. The school she had been at was for kids with autism, and it was great because there was a low teacher ratio with teachers that knew how to work with her on what she needed, as well as in-house speech therapy. But she wasn't getting enough interaction with peers or observing how normal kids interact.
So based on the doctor's advice, we found a great new place for her: a church dayschool that works with local school district special ed program. The 3yo class there has 12 kids: 3 from the school district and 9 typical 3 year olds. There are 2 teachers: 1 from the church and 1 spec ed teacher from the school district. This to us sounded like the ideal place for her, right in the middle of a bunch of regular 3 year olds, but with a special ed teacher in the class who could help make sure Sophie got what she needed. Even though the 3 school district slots were taken, we enrolled Sophie privately as one of the 9 private students.
A big concern, however, was pottying. The school required potty training and they don't really help the kids. At her old school, she had been making great progress and mostly keeping her pullups dry all day, but they would take her in the bathroom and help her. At the new school, there is a bathroom in the classroom, but she would have to go in, get undressed, wipe, pull pants back on, and wash hands by herself.
We were nervous about this, but we decided we could always go back to the old school if the new place kicked her out, or move laterally to the school district in a similar program at one of the elementary school campuses, but it would be with other special ed kids, and not so much integrated time with regular kids. Anyway, she did good the first couple of weeks, just one or two minor accidents. But then we had a week or two with lots of poopy incidents. There were notes, conferences, and brainstorming. They agreed to keep working with her, but I would go whenever she had an incident and take her out of school to go home. I think I did this one time. We also worked on a reward system for days she did well.
There had been other issues too. First was running out of the classroom. She had a few timeouts and trips to the office about that. There was pushing another girl over (I'm still not sure this wasn't inadvertent.) Then was playing in the potty while in the bathroom. Then touching the teacher's things (this one went on a long time and may still be a problem). Climbing on tables is also a worry for the teacher. I told her that Sophie has been doing that since the day she could move, and not to worry, she hardly ever falls.
But, for all that, there were lots of good things. They said Sophie was very quiet, but noticed that she would always pipe up at circle time and answer questions. She would pay attention to stories, always is interested in calendar time, and loves the dress up station and singing and playing music.
At home, we immediately noticed that Sophie would play group games where she named all her toys after her new friends. The potato head collection became Sophie, Ben (Ben is
always the first friend mentioned), Addison, Shyann, Vivian, etc. with the big one being her new teacher. We also noticed her speech start to improve dramatically.
As a consequence of leaving the old school in August, we also had to find a new speech therapist. So in September we also went back to the place we'd gone before to see Karen again. Karen hadn't seen Sophie in a year and was amazed at how much she'd advanced. She was also excited because now Sophie was talking, albeit limited and hard to understand, so now she had something to shape and work with. (Before she had literally just been trying to get Sophie to open her mouth and make sounds--any sounds). She started working on long "e" and "a". Sophie finally was able to say Mimi, which is what she calls Stephanie's mother. She's also picked up "s" and I noticed at Christmas time she could actually say "Aunt Shelly".
Not only did her speech improve, but the complexity of what she was saying took off around October and November. She suddenly seemed to be "getting" all kinds of things. And I found that I was talking beneath her. She started to string together 5 - 7 word sentences all over the place. She started all kinds of pretend play, like "I am the baby's mommy" or "I'm Vivian and you're Mrs. Thompson." She saw written "Sophie's set" and said, "That's my set!" She started having conversations with her dolls and animals. She'd put her baby in the shopping cart. The dolly would have to go everywhere with us. In December, there were days where I literally from one day to the next noticed her speech improving. Finally, I'm starting to see other people understanding some of what she's saying. A lot of it still needs translation and only I and Stephanie get it, and even then not always. At the playground yesterday, I distinctly heard her ask someone how old they are. That and saying/asking names are the 2 big things for little kid greeting and interaction, so we're excited about that. Plus, her pronunciation of her name is almost there.
She still has a long way to go. Talking is huge, but a lot of it is reactive and hopefully the interactive stuff will come. But what we've seen this year, and especially the last 3 months has been so promising that we are very hopeful about 2012.
Labels: autism, development, doctor, review
