We had a meeting with the local chapter of the Autism Treatment Network. It is an initiative funded by Autism Speaks which compiles a database of information for research purposes. It also aims to educate medical professionals working with autistic children about medical issues frequently affecting the autistic population. There are other benefits apparently like access to nurses for advice but that part seemed a bit vague to me -we do have a doctor, several as of now in fact. Anyway, most of the meeting consisted of going through the forms I filled out (a constant in the autism reality I realized) and reiterating Sophie's medical history and regression yet again. However, we do consider autism research to be an important endeavour and were happy to add Sophie's information to the database. With more understanding of the disorder comes more ability to help, hopefully.
An interesting thing happened at the meeting which prompted me to see Sophie in a different light. My husband and I were sitting with Sophie across the table from the two nice ladies conducting the meeting. Sophie was, as Sophie does, attempting to shut down but she was unable to because she fell asleep in the car on the way (even Sophie can't fall asleep twice in a row). Therefore she was sitting rather petulantly on my lap apparently totally disinterested in our conversation. At one point one of the ladies placed a set of stacking cups in front of her. My husband and I instinctively said "oh, she won't play with those". At which point Sophie sat up straight and without acknowledging us proceeded to stack the cups into each other eight times as if she was doing it every day of her life, with her left hand no less! (She had the fingers of her right hand in her mouth). She then removed said sloppy fingers and stacked the cups with the right hand to drive the point home (stacking cups got nothing on me). Then she placed her fingers back in her mouth and slumped back against me again as if nothing relevant took place. The only sound in the room was that of four jaws hitting the floor. Naturally, a set of stacking cups was purchased shortly thereafter.
As I thought about that incident over the next few I realized that Sophie has been making slow but consistent gains for months. Just as her regression was subtle and initially unperceivable so has been her progress. For the record, in the past several weeks Sophie
- Has been making consistent gains at daily play group, playing more independently and trying new things
- Been using pictures to express her wants
- Consistently used the words "go" and "up" in proper context
- Learned to say an approximation of "bye" and a wave
- Re-learned how to use a spoon
- Learning and doing well at walking holding hands
- Seems to be more present and engaged
- Plays with her toys all the time (bead roller coaster, other sensory toys)
- Shows affection and empathy to siblings and friends who are upset.
- Uses a Thomas game on an iPad and requests it all the time
- Initiates interactions such as rolling a ball back and forth with her sister on her own request
These are all small things but in my mind symbolize bigger things to come. The main thing is she is able to learn, and learn relatively quickly. A lot of the things on the list she seems to have just "got" without much help. Some of the skills offered a glimpse for me how she needs to be taught. With my other children I either told them what to do, or showed them what to do. Neither of these methods are very effective for Sophie. She needs to be physically taken through the motor action in order to make the connection in her brain. So to teach her how to use a spoon I placed the spoon in her hand, closed her fist around the handle and with my hand over hers went through the motion of spooning apple sauce into her mouth several times. And she learned! I was quite taken aback of how willing and able she is to learn skills, if she is taught the right way. I must remember this.
Over the next several weeks we will work on reinforcing these new skills and planning for some bigger goals- limiting Thomas videos (yikes!) and potty training (double yikes!). However I think with slow, consistent work we will see success. Knowing that Sophie is able to learn, has the capacity to absorb new information, just needs different teaching methods makes me quite optimistic.
Tomorrow we are going on a 2-day stay at Great Wolf Lodge as a belated celebration of my older daughter's seventh birthday and as a "we need and deserve a vacation" get away. We have never done something like this and are quite excited. I am also curious what Sophie will make out of all of it. I will report on our experience when we get back.