I've been trying to sum up in my mind how the first week of summertime school has been going, and I realized there is really no way to categorize it. It's been a huge mix. The best was Tuesday morning, Janey's second day of school. After Monday seeing her try to drag me in the opposite direction of the school to avoid going, Tuesday was the opposite---she was dragging me TOWARD the school, as happy as she could be, singing and skipped and thrilled to be going back. That did my heart good to see. I was feeling on a high, but when I went to get her that afternoon, I could see from the looks on people's faces the day had had some issues. The aide told me Janey had bitten her own arm a few times. The scenario was familiar to me---Janey wanted to go for a walk, she couldn't go that very second and so she got mad and bit herself. It was the first time they'd seen her do that, and it's an upsetting thing to see. I reassured them that I know it happens, and her ABA specialist has gone over the plan for handling it, but it still doesn't make it easier for them, or for Janey. That afternoon at home, she was mostly happy, but at one point, extremely suddenly, she started screaming and crying as hard as I've ever seen her do, and believe me you I've seen her cry pretty hard. It was literally from one second to the next. I managed to get her to stop by singing and talking in a low voice, and within 10 minutes she was happy again. That is not Janey's typical pattern.
Yesterday, she was back to trying to drag me away from the school, but not with a lot of true effort. She had done a little biting herself again, but there was less of the stunned look from the staff, since they'd had their baptism in fire. I think when you see the charming, happy, delightful Janey, it's hard to picture what the depths of the tough times are like, and it's always a shock to people the first time they see it.
The sudden bursts of anger or sadness or what looks like despair are a new thing. Usually, Janey'd go on about 2 week cycles of happy or sad. You'd know if she was happy, she was fairly likely to stay happy, and the same with sad. I am guessing this is early puberty related. The up side is there have also been wonderful times of true connectedness and happiness. A few days ago, Janey went over to Tony, hugged him, and said "I love you!" That is the first time she's ever said that to him. To say it meant a lot to him is putting it extremely mildly. And she does love him. She was waiting for him to get home last night, and I felt like it was one of the first times ever she'd really been waiting for him---that she understood he'd be home soon and was anticipating it. I said at one point "Daddy will be home any minute" and she said in a high pitched thrilled voice---"Any MINUTE?" and went over to the window to watch for him. It was great to see.
So it's been a week of samples of all kinds of Janey behavior. She is keeping us on her toys. I could hire her out to give people a quick introduction to lower functioning autism---within a day, she'd show them a huge variety of the behaviors they need to learn about. It's tiring. But somehow, it does feel a little like progress.
Rarer in Girls...Life with my daughter Janey, who is twenty and severely autistic
2 comments:
ETA: Sorry, Suzanne, I just went to the amazon site and saw your review. It was pretty much what I thought about the book too…It only addressed what one segment of the autism population sees, not what many parents of girls on the spectrum see.
I do know that our therapist (Dr. Karen McKibben) is working on a book with Tony Attwood addressing the issue of girls with ASD. I'm not sure of the scope of the book, because I think it's being written by different authors, but our Dr. Karen was putting together anecdotes (some of ours may be included) from different clients. I'm hoping it's a book all parents with girls on the spectrum can find beneficial. If I hear more about it, I will let you know. It's been in the works for quite awhile…!
Original post:
I think you've hit the nail on the head; sometimes the unpredictability is what kills us. If I could see the patterns, I would try to "fortify" myself for the harder times, but when things are happening without an apparent pattern, it's so much harder to regain your strength. Hopefully, your writing is helping see if there are any patterns. Hang in there…as her summer program gets more routine, I'm sure Janey will adjust and be back to her happy self.
I wish I could remember if I had read a book that dealt with puberty and autism. I have "Girls Under the Umbrella of Autism Spectrum Disorders" by Lori Ernsperger, which is good, but kind of all over the map as far as helpful advice. If you see it at the library or bookstore, you may want to peruse it first. My friend's son, who has ASD, is seeing puberty manifest itself in anger outbursts, some of them physical (to others). I can't imagine what it must be like feeling so frustrated and emotional but not fully understanding what is happening. My DD actually read a lot about adolescence on her own and seems okay with handling it on an intellectual level, but day to day can be challenging. Do you think Janey is ready to hear a social story about adolescence at this point?
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