Carly's Parents: To date, what has been most instrumental is that we have had consistent therapy and dedicated staff. We have integrated several of these therapists into our family life. We have never given up. We have been fortunate in that we have been able to provide Carly a full-time applied behavioral analysis (ABA) program since she was 4 years old, so we stick to evidence-based intervention and do not do other therapies that have never been clinically proven to help kids with autism (floor time, TEACH, eclectic approach, etc.) In fact, there was a study done between ABA and an eclectic approach and kids who got the eclectic approach actually lost IQ points!
I have to tell you also that her greatest gains have come in the past year or so — after we took her out school. As much as she wants to be with her peers, we made the decision to take her out because she was regressing. We sued our school board and won the right to have her ABA therapist with her but, even with that in place, the school system where we live could not provide curriculum and placement for her that worked and I was tired of trying year after year. She had been in and out of several schools and placements. There is no autism stream where we live so her first placement when she was 6 years old was in a DH — developmentally handicapped — classroom, where she clearly did not fit in academically. Bottom line: She is not in a regular school right now so we make every effort to have her with age appropriate peers, and she also has the luck of having a "typical" twin sister, so there are always kids her age around.
We have also been working with doctors over the years using drug therapies to help Carly's impulsivity and hyperactivity. We have had only moderate success going that route and are still searching.
McKenzie: What role did the family play? What specific things did you do at home that may have made a difference?
Carly's Parents: Some families are amazing at providing therapy for their kids. We are not great therapists. Our role has been one of advocating for Carly and securing her the resources she needs. So while we give her love, attention and care, my wife and I do not do the one-on-one therapy that she needs; we leave that to the experts.
We try to integrate Carly into as many family events as she can manage. We have found routines that she loves and that relax her such as bath time, reading books, swimming. cooking (following recipes) and playing games (she now plays Connect Four and Chess). We strive to keep her engaged in activities as much of the time as possible.
We use as much verbal praise as we can and we have learned to talk to her like we would any of our other children. We used to talk about her like she wasn't in the room. That was a big mistake! Also, Carly's siblings love her and are very proud of her. They not only take responsibility for assisting her, but love to give her affection and attention. They also defend her big time when people are rude to her or make ignorant comments, etc. (as do we -- don't be shy to set people straight!)
McKenzie: How did she learn to read and write?