School starts tomorrow, and I must say it's not a moment too soon. I don't like summer. I never have, and I don't think I ever will. These last few weeks of summer with Janey have felt brutal.
I of course feel right away I must modify that. There have certainly been worse times with Janey, many times, times when she was a lot more unhappy or manic or angry. But in terms of sheer endlessness, these few weeks have few equals.
I have been taking the advice of a lot of my friends I've met here, and I thank them for it. I've been trying to be easier on myself in terms of what gets us through the day. TV is what gets us through a lot of days, and I realized lately I have a tremendous amount of guilt about that. TV equals bad parenting, in my mind. But in some ways, that is a selfish view, because for Janey, TV equals happiness, often. She adores her shows. Her default position in the house is in front of the TV, standing up and dancing and jumping. She has strong opinions about shows, and even episodes of shows. It's not random watching. She'll get an idea she wants to see some certain episode, and she uses every bit of her available communication tools to let me know which one---a combination of phrases, pointing, and sometimes screaming. I am pretty sure she knows all the dialogue of her favorite episodes of shows by heart. She knows when the scary parts are coming up---she'll start screaming in advance (and by scary parts I mean often very, very mild scary, about as scary as Kipper or Angelina the Ballerina or the like gets). She interacts with the shows, more than with people. So---I am trying to relax and accept that. But I'll admit it. I feel like a bad mother when the day is mostly TV, often.
I think what most frustrates me is how hard it is to go anyplace outside the house with Janey. It's partly that I get cabin fever, although I have a large tolerance for going no-place, but I do have my limits. I want to get out of the house, but with Janey, it's so hard. It's a tough thing to admit to myself that it just really isn't safe for me to take her most places on my own. It might be fine for 95% of the time, but the 5%, when she gets upset and starts to freak out, and screams and bites her arms and sometimes, once in a while, lashes out at me or at possibly even someone else---that is not a good scene. Taking Janey places is a two or more person job. If there is backup, it can be great. I'm thinking about our trip to Ohio, or the wedding, or visiting Maryellen. If there's two people around or more, we've had some very successful outings. But these weeks, it's been just me, and that's tough. Again, I'll admit that makes me feel guilty. I have an overactive inner voice, one that says "You are just lazy. You aren't trying hard enough. You just want to stay home and sit around" I think it's time I told that inner voice to shut up and look at the facts.
We do one trip every day---the short walk to the "ice cream store", the convenience store near us. I've been remembering the wise words of many of you, and realizing that to Janey, this is a special thing, a routine she loves, even if it might not seem like one to me. She loves all the steps---getting shoes on, me talking about what I need to do before the walk, the short walk to the store, during which she only needs to hold my hand a little, the time in the store, making the choice from the rows of chips or the freezers of ice cream, going to the counter, getting attention from the cashiers (they seem to be an extended family from Bangladesh, and they are very sweet to Janey) my prompting her to say "thank you" or "goodbye", the walk home, the time in the back yard eating her treat---when I think about it, it's a lot of social skills and self-help skills tied up in a short time.
So, when I think about it, these weeks have probably been harder on me than Janey. I think Janey is okay. It's me that is stir crazy and sick of kids' TV and wanting to be able to go into another room without fearing toileting accidents or food thrown all over. That is why I think of the first day of school as Mother's Christmas---forgive me the sacrilege. I talked to Janey's teacher for the year yesterday. It's her first man teacher, and the same teacher she had over the summer, the husband of the ABA supervisor who has been one of the most wonderful people I've worked with in the schools over the years, and he seems like a wonderful teacher. I am looking forward to Janey's 6th grade. I think she is too, as much as she looks forward to things. So I say goodbye to the summer of '16. I won't say good riddance, but I will say I'm ready for that goodbye.
Rarer in Girls...Life with my daughter Janey, who is 21 and severely autistic
Showing posts with label back to school. Show all posts
Showing posts with label back to school. Show all posts
Wednesday, September 7, 2016
Monday, August 17, 2015
The Quest for Help
The big 11th birthday is over. It was a good one, truly. Janey was happy most of the day. Our dear friends invited us to a BBQ/Birthday/Going off to college party, and we all had a wonderful time. Janey lasted there longer than I think she has at anyone's house for years, with just a little break for a car ride in the middle. She adores my friend Maryellen and her daughter Julia, and we are so thankful as always for friends that value and love Janey. Freddy had a very good birthday too, and we felt quite happy about how the day went.
The night was another story. We realized, way too late, that Janey had had far too much chocolate during the day. She didn't sleep, not a wink, until about 4 am. She wasn't tired at all. She didn't scream, much, but she didn't sleep. It was like it was daytime for her. Tony and I traded off shifts and both wound up exhausted.
We couldn't sleep in this morning, as we had a 8 am appointment at the Lurie Center, the autism clinic. We'd put off the appointment several times due to Janey's illness, so we needed to go. We dragged ourselves out of bed and made it on time.
The doctor I saw (mostly just me, as Janey wasn't having any of it and only lasted about 3 minutes before Tony had to take her out of the room) was the same one we saw before, a very thoughtful and knowledgable woman. We talked mostly about medication, and ideas she had for ones that might work better for Janey. The problem is that very rightfully, a child should have only one psychiatrist prescribing medication, and Janey has the psychiatrist she'd had since she was 5. We need to make a switch to use the Lurie Center for medication, and we aren't sure what to do. I think the Lurie Center knows more about autism---I know that, really, but we like Janey's current psychiatrist and he's always been available when we needed him. And we are never sure about medication, and tend to be very conservative about it, so we need to make some decisions.
The other talk, just briefly, was about help and respite. Basically, we went over the fact there is none. Starting this fall, Mass Health will cover ABA. The problem is, ABA isn't respite. It's a very specific kind of teaching that more and more, I don't think helps Janey at all, and might actually hurt her. It's well meaning, it's often extremely skillfully done, but reading school reports and looking at what 7 years of ABA have actually done for Janey---well, I don't think adding more of that to her life is going to help anything. It's certainly not going to reduce her stress or our stress. So---basically, more ABA isn't going to do a thing to help.
I jumped on a few opportunities our local autism agency posted, without thinking them through too well. They were hosting an evening at the Children's Museum, just for autistic kids. That might be okay. It's certainly not respite, and getting there will not be easy, but it's something. Then, there was actually a drop off, one to one program. In my delight that something like that was offered, I RSVPed right away. Finding out more about it, I realized it's in a place only accessible reasonably by public transit, and not directly by that without changing trains, and that it's to go to a plaster craft activity. I can't take Janey alone on the train. She will have no interest in plaster crafts. I'm still going to try to go, because the lure of 2 hours of respite while she's at the program draws me in, but I will need to bring someone else with me, and I am very worried Janey will not make it through the time, based on the last time I attended an activity, with both Tony and me THERE. She was the only child I saw there who needed to leave, basically because she was kicking me in the head. The third activity is a field day, not drop off. I will try it. I am glad there are activities, and I hope they work, But 11 years of Janey have led me to a deep form of realism about such things.
Today, we got the back to school information. I had planned to sign Janey up for after school this year. We didn't last year, because it was only going to last until 4:15, and Tony wouldn't be able to drive there to get her. The drive is at a very busy part of the day, across town, and increasingly, I can't drive if it's dark at all. But this year, it was going to run later, until 5:15, so we planned to try it. The flyer in the material today said the program will have a 17 to 1 ratio. I called the school and talked a minute ago to the very nice director of the program, who informed me that due to a lot of budget cuts, they are unable to serve kids that can't work under a 17 to 1 ratio. She did understand that means basically NONE of the kids with autism at Janey's school can attend the program, not just Janey. Some kids in her program could handle maybe a 5 to 1 ratio---not every kid needs one on one like Janey---but I don't think there's many autistic kids at all that can be in a program with a 17 to 1 ratio! I asked her if she knew of any people I could call to try to get them more funding, and she said she appreciated that and would look into it for me. About half of Janey's school, 19 classrooms, I believe, are for kids with autism. It's kind of sad that the city won't fund afterschool for them. And kind of a blow to our plans for using afterschool for respite help.
Reading all this back, I worry I sound like I'm being a no-win kind of person. Instead of saying "Wow! Now Janey can get ABA and go to a art activity and after-school! They are all open to kids with autism!", I am saying none of them will likely work for Janey. This brings us back to the doctor this morning, who completely understood what I was saying. She said the big umbrella of what is currently diagnosed as autism very often doesn't cover the kids at the extremes. There are many, many kids with autism that would be, and are, very well served by what is out there. But for a child like Janey, with a severe intellectual disability, with self-injurious and aggressive behaviors, with tantrums and limited speech---well, anyone who has spent more than a few minutes with Janey gets it, right away.
This is a long entry. If you got this far, thank you! I am half working this all out in my head. We'll keep on questing, and keep on writing about it. Meanwhile, the birthday love so many of you sent our way keeps us going!
The night was another story. We realized, way too late, that Janey had had far too much chocolate during the day. She didn't sleep, not a wink, until about 4 am. She wasn't tired at all. She didn't scream, much, but she didn't sleep. It was like it was daytime for her. Tony and I traded off shifts and both wound up exhausted.
We couldn't sleep in this morning, as we had a 8 am appointment at the Lurie Center, the autism clinic. We'd put off the appointment several times due to Janey's illness, so we needed to go. We dragged ourselves out of bed and made it on time.
The doctor I saw (mostly just me, as Janey wasn't having any of it and only lasted about 3 minutes before Tony had to take her out of the room) was the same one we saw before, a very thoughtful and knowledgable woman. We talked mostly about medication, and ideas she had for ones that might work better for Janey. The problem is that very rightfully, a child should have only one psychiatrist prescribing medication, and Janey has the psychiatrist she'd had since she was 5. We need to make a switch to use the Lurie Center for medication, and we aren't sure what to do. I think the Lurie Center knows more about autism---I know that, really, but we like Janey's current psychiatrist and he's always been available when we needed him. And we are never sure about medication, and tend to be very conservative about it, so we need to make some decisions.
The other talk, just briefly, was about help and respite. Basically, we went over the fact there is none. Starting this fall, Mass Health will cover ABA. The problem is, ABA isn't respite. It's a very specific kind of teaching that more and more, I don't think helps Janey at all, and might actually hurt her. It's well meaning, it's often extremely skillfully done, but reading school reports and looking at what 7 years of ABA have actually done for Janey---well, I don't think adding more of that to her life is going to help anything. It's certainly not going to reduce her stress or our stress. So---basically, more ABA isn't going to do a thing to help.
I jumped on a few opportunities our local autism agency posted, without thinking them through too well. They were hosting an evening at the Children's Museum, just for autistic kids. That might be okay. It's certainly not respite, and getting there will not be easy, but it's something. Then, there was actually a drop off, one to one program. In my delight that something like that was offered, I RSVPed right away. Finding out more about it, I realized it's in a place only accessible reasonably by public transit, and not directly by that without changing trains, and that it's to go to a plaster craft activity. I can't take Janey alone on the train. She will have no interest in plaster crafts. I'm still going to try to go, because the lure of 2 hours of respite while she's at the program draws me in, but I will need to bring someone else with me, and I am very worried Janey will not make it through the time, based on the last time I attended an activity, with both Tony and me THERE. She was the only child I saw there who needed to leave, basically because she was kicking me in the head. The third activity is a field day, not drop off. I will try it. I am glad there are activities, and I hope they work, But 11 years of Janey have led me to a deep form of realism about such things.
Today, we got the back to school information. I had planned to sign Janey up for after school this year. We didn't last year, because it was only going to last until 4:15, and Tony wouldn't be able to drive there to get her. The drive is at a very busy part of the day, across town, and increasingly, I can't drive if it's dark at all. But this year, it was going to run later, until 5:15, so we planned to try it. The flyer in the material today said the program will have a 17 to 1 ratio. I called the school and talked a minute ago to the very nice director of the program, who informed me that due to a lot of budget cuts, they are unable to serve kids that can't work under a 17 to 1 ratio. She did understand that means basically NONE of the kids with autism at Janey's school can attend the program, not just Janey. Some kids in her program could handle maybe a 5 to 1 ratio---not every kid needs one on one like Janey---but I don't think there's many autistic kids at all that can be in a program with a 17 to 1 ratio! I asked her if she knew of any people I could call to try to get them more funding, and she said she appreciated that and would look into it for me. About half of Janey's school, 19 classrooms, I believe, are for kids with autism. It's kind of sad that the city won't fund afterschool for them. And kind of a blow to our plans for using afterschool for respite help.
Reading all this back, I worry I sound like I'm being a no-win kind of person. Instead of saying "Wow! Now Janey can get ABA and go to a art activity and after-school! They are all open to kids with autism!", I am saying none of them will likely work for Janey. This brings us back to the doctor this morning, who completely understood what I was saying. She said the big umbrella of what is currently diagnosed as autism very often doesn't cover the kids at the extremes. There are many, many kids with autism that would be, and are, very well served by what is out there. But for a child like Janey, with a severe intellectual disability, with self-injurious and aggressive behaviors, with tantrums and limited speech---well, anyone who has spent more than a few minutes with Janey gets it, right away.
This is a long entry. If you got this far, thank you! I am half working this all out in my head. We'll keep on questing, and keep on writing about it. Meanwhile, the birthday love so many of you sent our way keeps us going!
Subscribe to:
Posts (Atom)