I became aware of SM by reading an article in the science section of the NYT’s in April ’05. I had NEVER heard of this condition, but the article described my daughter to a "T." I jumped online right then and ordered every book I could find on Amazon about SM. I thought I could follow the principles in these books and help her myself. This was not altogether true.
I attended my first conference in Columbus OH in November ’05. It was a 1 day meeting run by Dr. Shipon-Blum, who is on the forefront of SM; she devotes her entire practice to helping kids with this condition. The information was transforming, and it felt terrific to be in a room with 200 people who "understood." My major takeaway was that you NEED a professional helping with the process. I came back and set out to find someone with experience with SM, and hit a brick-wall.
I joined a support group for parents of SM kids, but this met about an hour away and these therapists would not be easily available to me. I took my daughter to the Pediatric Anxiety Center at the University of Illinois in Chicago and had her evaluated over a tree day period. About the same time I located a therapist who had not heard of SM, per SE, but dealt with alot of anxiety disorders in children. We decided to work with this person. I brought this doctor and my results from University of Illinois to my school and along with my daughter’s teacher and the early Intervention Special;ist set up a 501 Plan to make accommodations for my child’s disability.
For example, she would never be forced to answer verbally, and would have all her assessments revamped to be non-verbal (e.g. "point to the letter M, vs. what letter is this? And, place this number cards in order vs. count to 20 for me.") We met weekly with the therapist. Initially I had to be in the room, then closer and closer to the door until I was on the other side of the door. It took months before my daughter would speak directly to the doctor, but little by little she did. We used charts and rewards to incent her behavior at school. She would have to say "hi" or "bye" to the teacher or ask a friend a question, with me there etc. Obviously the goals got harder over time.
The second conference was July ’06. It was a family conference in Chicago, of all places. My husband and I along with our 4 kids (and dog!) attended. I told my daughter that these children have difficulty speaking at school too. She seemed anxious, but I think also appreciated it. She could also see that she could do some things other kids could not; she raised her hand to help the magician (non-verbal), when some kids could only sit on their parent’s laps.
We continued our weekly meetings for 2 years and now see her therapist once a month. She and the classroom teacher and the school social worker communicate frequently. The situation is vastly improved! She raises her hand and speaks daily at school. Yes, she’s quiet, but she’s doing great. The 3rd conference was July ’07 in St Louis. I went more to support other families than to help myself.
Without the people at selectivemustism.org my daughter would not be making this kind of progress. That’s the first place a parent should go to get information and support if they suspect their child has SM. The criteria for SM are spelled out on the website, but basically, if a child communicates normally at home, but does not speak to non-family members outside the house, there’s reason to investigate further. Certainly speak to ones pediatrician, but many are not yet fully aware of this condition.