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?
Carly's Parents: We have been working on reading and comprehension strategies since she was 2 years old. We started with PECS and Mayer Johnson tools. Our whole house was full of labels and stickers with everything identified. When we read her stories — some we created with Mayer Johnson software and just regular books — we made sure she sat so she could see the words as well. We didn't just read to her. Much of her ABA programming from early on required her to spell and identify three-letter words. The games I bought her required her to match words and/or numbers. I also bought her a lot of games that had sequence cards, bingo, memory games, etc.
We moved onto flash cards with letters and pictures, having Carly point and move the cards around to spell words. We have used communication binders — laminated pages of pictures and words organized into various topics such as food, play, self-care, etc. that she was quick to navigate.