Search This Blog

Monday, June 27, 2011


The past few days have been a roller coaster. At times, Janey has been incredibly tough---as bad as the worst of the bad days. On Saturday, she spent huge parts of the day just screaming. And I mean the kind of screaming you can't even imagine unless you've seen and heard it---screaming with her mouth wide open, a look of fury or terror or something in her eyes. She is scary when she does that, scary to herself and scary to us. It comes out of nowhere, or from a simple refusal to do what she wants right when she wants it, or when she just feels slightly frustrated even. It happens more when she is tired, or hungry, or bored. And it's unbearable, pretty much. We have been doing everything we can just to avoid the screaming---taking her for long rides, which she loves, doing nothing but holding her, keeping her incredibly busy. Today she was cheerful almost all day. Both Tony and I were home all day, and did nothing but play with her. It was nice, but not doable every day. And even so, by evening, she had a screaming fit. She tried to bite Freddy, which is always my big fear when she gets like that, or that she will bonk heads with us hard, or hurt herself somehow. I have no clue, no idea how to help her. We actually lowered the dose of her medication after this got started---we had been on a higher dose for a month or so and things seemed to be gradually getting worse. I am not going to keep giving her doses of medication that don't seem to do anything, or make things worse. And I don't think there are a lot of other medications out there. Or ideas out there on how to help. I am very, very worried about how she will do in summer school. Mainly, I worry how the teachers and aides will treat her if she is very difficult. I know at her regular school, they love her enough to handle the tough times, and they know me well enough so that if they couldn't, they know they could call me. But here, they won't know her. I did hear that some other kids are going to the same location from her school, even one boy in her class with a very nice concerned mother, and that helps to think about---I'm not all alone. But with a child that can't tell you about her day, it's scary to have her at a new place. However, I think I have to try it. I have to stay sane. I can't be a mother to her without breaks now and then. Even with these few days of summer, which weren't much more than the weekend, I felt completely overwhelmed and out of energy. I am finally admitting that Tony and I need help with her---by respite from school, and more if we could get it, which we can't, so school and summer school are our lifelines.

And yet, there were times lately she was precious. Today she did one of her very, very rare pees in the potty, which was great. There was a long period today when she was being so engaged and cute and loving. We played all kinds of games like Creep Mouse and Here We Go to Boston and things. She loves being outside and playing in water (and making mud pies) She loved our car rides. She is talking a tiny bit more than a few weeks ago. It always seems slight progress comes with these hours of horror. Maybe every time she steps ahead a little, she sees how far she is from the rest of us, and how little she can communicate. I'd scream too.


Zaffiro Images said...

Hello – I stumbled on your blog just by clicking on “Next Blog” on the top. I do that from time to time to see what else is out there. Sometimes I stop and read others I just scan through. Today, the picture of your adorable daughter on the top of your blog caught my eye and I began to read. I read several of your blog posts. You write very well about your daughter. I know nothing about autism; none of my kids have it. Your writings gave me a clearer view of the struggles an autistic child has, and the amount of patience one needs to interact. You are right when you say “What is harder than people picture is the endlessness of it.” Endlessness. That is a wakeup call to those of us who don’t have autistic children and have no idea what you experience. I enjoyed reading your blog, learning a little more about autism and understanding what a family with an autistic child goes through every single day. Thank you!

Suzanne said...

Your comment means a great deal to me. That is one of my big aims with this blog---to help people understand what life is like with a child with autism---hopefully the good as well as the bad. And the endlessness is a huge part of it. You can't write off bad days as part of a phase. I love to do the "Next Blog" surfing too. It's always interesting to get a little view of life for someone else, and I'm really pleased you found my blog that way. Thank you for reading and your very kind comment!