I haven't written in longer than i would like, got swept up in the pre-Christmas rush. There has been something on my mind though which i really wanted to write about. One of the main purposes for this blog is to have an ongoing record of what we are doing with Sophie and how it is working. I hope that will add a bit of a scientific method and be something we can review in months to a year from now while considering our next steps. Of course much depends on the progres Sophie makes in that time.
I have mentioned reading Stanley Greenspan's "Engaging Autism" and being inspired by it. I want to write more about it because it has made a tremendous difference in our lives and our approach to Sophie. He pioneered the DIR Floortime method. I won't detail its history here, but rather how we are utilizing it and the results we have observed. Dr. Greenspan outlined eight developmental milestones and the struggles that children on the autism spectrum run into alng the way and how to overcome them.
The stages are:
- Regulation and interest in the world (engagement)
- Intentionality and two-way communication
- Social problem-solving, mood regulation and formation of self
- Creating symbols/using words and ideas
- Emotional thinking, logic and a sense of reality
- Multicausal and triangular thinking
- Gray-area thinking
- Growing sense of self and a reflection on an internal standard
Prior to her regression Sophie was at the fourth stage, which apparently is not uncommon for autistic kids to get stuck at (or before even). The regression brought her down to ground zero essentially. She was a physiologically functioning vegetable with the ability to walk. Our world crumbled and the outcome seemed bleak. I can't remember how I found "engaging autism". Must've been through the mountain of books I buried myself under to not even find hope, but some glimmer of understanding. All the tips and activities in the other books seemed well beyond Sophie. Rewards? Incentives? We couldn't even get her to look at us. What possible incentive could we offer? I would also be lying if I didn't admit that the reward-based repetitive system of training makes me feel very uncomfortable. We didn't raise our other children this way, and we don't feel that we should give up our parenting values because Sophie is autistic.
Greenspan's methods and theories struck a chord right away. His reasoning and belief that autistic children can go beyond learning through repetition (although there is a place for that too) and achieve the ability to think, feel and use logic was something I do believe. I also believe that it takes much more effort and time and the author didn't dispute that at all (I hate idealists, don't you?)
So we have started tentatively, in September when school resumed for the other children. At first it was nothing more than joining her in front of Thomas. Commenting on the action. Maybe giving a little foot tickle. Other playful teasing. Throwing her up in the air, blowing raspberries on her tummy. But always relentlessly pulling her into our shared world - bringing her to play group in the mornings even though we spent most time in the hallway. Taking her grocery shopping, errands. And talking her ear off. Look at that, look at this, beep beep on the belly, got your nose, peek a boo... Basically meeting her at her stage of development which seemed to have been around that of a six-month old.
We didn't let her "space out" for a minute when we were working with her. But we were always gentle, never impatient. And for the first month not much happened. Subtle things maybe, but nothing to write home about (or in a blog). But then we noticed a shift. The girl whom we could probably leave alone for the whole day with Thomas and a bowl of food for a babysitter started seeking company! If my husband and I were in the kitchen she would waddle over and peek in. If I was putting baby brother down for a nap, she burst into the room with a goofy grin like "found you!" I don't need to say that never happened before. And the eye contact and tracking us around the room- amazing. In play group she plays, what a concept. She doesn't seem to have a reason to escape to the hallway anymore. And she is showing empathy, trying to comfort crying siblings.
We still have so far to go. But now that she's in our world with us, we are so motivated to continue. Seeing her little face peering intently into mine, feeling her little hand on my cheek using an almost blind approach to learning to speak. And of course her cheekiness- initiating peek a boo or chasing games. Giggling like crazy when we join her. It's like a chain reaction- now that she's giving feedback her older sister is trying to find ways to make her giggle. I feel hopeful again that some sort of a sister relationship is possible after all.
For other parents with autistic kids reading this - this is not to brag about our accomplishments or to advocate a particular method. This is merely a snapshot in time, where our life is now. If Sophie can engage, can enjoy being a participant in life rather than a bored bystander I think there are many things possible.