A Tale of Two Afternoons

Janey gets home from school this year at about 2:30.  This is far earlier than other years, when she went to after-school.  I looked into after-school for her this year, and talked to the director, who seemed great, but it would only last until 4:15, and has no transportation.  That would mean I'd have to pick her up, as Tony would not be home yet, and driving out into Boston traffic at that time is not something I want to do.  So for now, Janey has the afternoon at home.

Mid to late afternoon has always been the toughest time of day for Janey.  I think she gets tired by then, due to her poor sleeping, but she doesn't nap.  She has used up her day's reserves of holding it together.  Daddy isn't home yet, and I am tired too.  If she hasn't eaten well, she's hungry.  Her medication is wearing off.  There's tons of reasons, and they all combine to make around 3-5 pm the most likely time of the day for meltdowns.

Monday, Janey got off the bus ready to explode.  She ran to her bed and flung herself onto it, something that looks like a teenager to me and almost makes me laugh, if it wasn't usually the start of trouble.  I went over to her and did my afternoon bit "I'm so happy to see you home!  I missed you a million!  How is my sweetie?  How was school?"  As usual, she doesn't respond.  Her pull-up was very wet, and so I started to change her.  When it came time to put another pull-up back on, she threw a fit.  She ripped the new pull-up.  If any of you have priced pull-ups for kids 8-14, you know they cost close to a dollar each.  So we discourage ripping.  I said "You don't have to wear a pull-up right now, but you have to wear some pants"  Janey decided she didn't want to.  She let me know this by starting to scream and grabbing my hair and pulling as hard as she could.  It took all my strength to get away from her.

I'll spare you all the details of the screaming, hair pulling and flinging about of things from that afternoon.  Suffice to say it was one of the longest two hours of my life.  When Tony got home, I was beyond discouraged and tired.  Janey was screamed out.  She looked burnt out, glassy-eyed.  So did I.

The next afternoon, I got her off the bus and braced myself.  She didn't look at me as she walked in.  She went straight for her computer, and started watching You-Tube videos.  On impulse,  I said "I'll be here reading if you need me".  She didn't.  For the next few hours, we barely interacted.  A few times, she went to get a snack and needed help cutting cheese or opening a jar, and I helped her, but we barely talked.  The house was quiet.  About an hour into the afternoon, she came over to me and said in a fast and odd voice, one I hadn't heard before from her, "Need a new pull-up"  I changed her as quickly as I could, without comment.  She gave me a look I won't forget soon---a look that said what she couldn't say in words---that she was thinking of the day before and glad we were doing this day differently.  When Tony got home, prepared to see us both as shells of ourselves, he was amazed we both looked rested and happy.

So what's the message?  I don't know for sure.  Whenever I think I've figured something out with Janey, I realize I haven't, so I'm reluctant to draw many conclusions.  But on Wednesday and Thursday, I took the same approach.  I kept things as quiet and low key as I could.  I interacted with Janey only when she requested it.  And we had great afternoons.

I keep thinking back to how I often greet Janey.  I do what I did for years with the boys.  I overact.  I truly am happy to see them after school, and I want them to know that.  I shower them with attention.  I think the boys liked that.  But the boys are different people than Janey.  Maybe it took me until now to really understand that isn't what Janey wants.  She has had an intense day at school, and she wants what a lot of kids want---to kick back, do her own thing and have her mother stay cool.  Every kid is different.  What Janey wants or needs, regardless of her autism, is not what William and Freddy want or need.  So for now, I'm going to back off in the afternoons.  No more dramatic greetings or smothering attention.  I will play it cool, and we'll see how that goes.

Back to Janey

I had a 4 night getaway in Maine, thanks to my parents and my friend Julie. It was wonderful---very relaxing. I missed everyone, but they seemed to do well without me. Janey had been over her crying times for several days, and she stayed happy and slept pretty well. I told her I was going, and talked a lot about how I'd come back, but I never know what she understands. I talked to her on the phone, but I never get much response from that. Nor did I when I actually got back. I have to admit it's a little sad to me. Janey did not show any sign of any emotion when she saw me. She looked completely uninterested. I know that can be that she was overwhelmed and just shut down, but I think I know that look, and it wasn't the one. Either I had prepared her very well and Tony and the boys had taken very good care of her, which was the case, or she really wasn't too torn up about me being gone. Which of course I wouldn't want her to be, but I'm human. It would have felt good to have her run and hug me and get excited. And she DOES do that with some people. She's done it at school quite a few times when seeing teachers or others she hasn't seen in a while, especially I was told when Donna, her PT, came back after being out for a while. She gets thrilled every time she sees my friend Maryellen. But for me, not so much. And I am fine with that. I guess that's the goal of attachment parenting, which isn't quite my philosophy, but which I agree with a lot of. She is securely attached and she knows I'm coming back. I'm rambling a bit.

Being away sometimes gives me a fresh perspective on Janey. This time, it make me think over again about how limited her ability to communicate is, and how I think a lot of her frustration is when she can't figure out how to ask for what she really wants. She asks for the closest equivalent she can say, and then isn't happy when she gets it, because it's not really what she wants. For example, she will often say "I want go in the car" I am pretty sure in her mind she has a specific destination, but she can't think of the words to ask. When she said that today, I tried listing everyplace I could think of she might want to go, and even that didn't work. She finally said "I want go in the car TO MAMA'S HOUSE" and when I said "We are already here!" she got upset. I was wondering (hoping, maybe) it was a roundabout way of telling me that when I was gone, she had wanted to go to where I was. But she's given that answer to where she wants to go a lot of times in the past, and I think more it means she wants to go in the car that is AT Mama's house, to go elsewhere. She also often says lately "I want water" which can mean anything from a bath to a drink to the wading pool to the beach to playing in the sink to washing her hands.

Anyway, in returning, I felt extremely grateful to Tony. He kept Janey happy, cleaned the house some, cleaned my car, had a special meal ready for me....I am very lucky, for friends and family that give me a chance to recharge and for a family I love to come home to.

"Thank you, Ms. Donna"

When I drop Janey off at school early a few days a week for early ABA with her fantastic ABA therapist, Mr. Ken, he works on having Janey say goodbye to me. She almost never does it spontaneously, but when prompted, she will say something. It's not always what we are looking for, though! Wednesday, instead of "Goodbye, Mama!", we got "Thank you, Ms. Donna!" Ms. Donna is Janey's PT, and Janey adores her, so I tried to not feel offended---it's a compliment, really! Today again, Janey said goodbye to me with "Goodbye, Ms. Donna!" but there was a big grin on her face. I got the feeling she might be kidding around with me.

However, this does illustrate what gets frustrating with Janey's speech. It's almost always scripted. When she uses the right script, it's great. But sometimes the lines that come to her head and out her mouth are not what she really wants to say. I see it a lot when she's upset. She'll ask for things she doesn't really want "I want cheese cutter! I want Kipper! I want snuggle on Mama's bed!", because those are familiar phrases to her, and in the midst of the emotion, I think it's all that she can retrieve. The very, very rare utterance that she is creating not from a script has a totally different sound to it. It's slower, in a different voice and is much more awkwardly said.

I think the way Janey can say so much with scripts sometimes disguises how little she really can talk meaningfully. We have never had what I'd call a conversation. It's vanishingly rare for her to answer a question. Her talk doesn't serve to do much of what language is designed to. It either asks for specific things or repeats things she has heard. An example is the other day after school, when I couldn't find her backpack. I asked her where it was, but knew I'd never, ever get an answer. She might have known, but that is not a question she could answer. Nor is such everyday things as "How was your day? What did you do at school? Who did you play with today? What book do you want to read? What do you want to wear? Do you like the kitties? Is it rainy today?" All everyday questions, but not ones Janey can answer, at least not with a huge amount of scripting and prompting.

As a result, any time I'm not with Janey is a bit of a black hole for me in terms of knowing what she has done and how she has been feeling. Her school is great at keeping me informed, but there is so much that happens in a day that just isn't the kind of thing that can be written down or reported to me. Even when I am actually with Janey, her real feelings are often a mystery to me. I can figure that crying means she is sad or angry or frustrated, that laughing means she is happy or excited or manic, but that's about as narrowed down as I can get it. Some day, I'd love to hear Janey tell me one of her dreams, or tell me something funny that happened at school, or tell me about a TV show or book she loved.

I'm very lucky Janey does talk at all. I need to keep that in mind, even when I am called Ms. Donna!

Best Friends Forever

Janey's brother Freddy has always been one of her favorite people. If you believe anything about astrology, which I don't, it would make sense---they share a birthday, so all those newspaper "if you were born this day" personality blurbs would be the same for both of them. Before Janey's regression, when she was two, she often called Freddy her "best friend forever" I think her regression was harder on him than almost anyone. He went from having an adoring sister to a sister that barely noticed him.

Just lately, the Janey that adored Freddy is showing herself again. The way her face lights up when he plays with her is like nothing else. Tonight, Janey and I were in the back yard, and I called Freddy to come out if he wanted to. He did, and when Janey saw him, she said, without one bit of prompting, "Hi, Freddy!" If you know Janey, she is not big on spontaneous greetings, especially to family members. She then followed him around, with a look on her face that can only really be called hero worship. He gave her piggyback rides, he showed her his attempts at cartwheels, they played "I'm gonna get you" and "Hockey Pokey"---they had fun. Not just Janey, but Freddy too. Gradually, I am seeing more of this, and it is wonderful. I think Freddy and Janey both really do have a BFF for life in each other.

Social skills lessons with the cats

I hit on something fun the other day with the cats and Janey. Generally, Janey acts like the cats don't exist. It's kind of like I picture the regular world and the magical Harry Potter world interacting. They share the same space, but they just don't usually see each other. The cats can get right on Janey's lap, and she acts like it's not happening. And if you know cats, you know that they are not very hurt by this, and in fact like her a lot for her indifference. But sometimes I wish she liked them. One of them, Gusta (short for Augusta, which was actually one of the names we were thinking of for Janey) was sitting around recently looking at Janey. I said to Gusta "Say Hi to Janey, Gusta! HI!, Gusta! What do you say to Janey? HI, GUSTA!" It's the kind of thing we say to Janey, to try to get her to say hi. Of course, Gusta wasn't buying, but Janey actually got it and laughed and laughed. Then she started saying it too "Hi, Gusta! HI! Say HI, Gusta" and added on "Look at me and say hi!" Since then, she wants to play the game over and over. I think it appeals to her that the cats are far worse at it than her. I'm not sure she gets that the cats are in fact SO bad at it that no amount of coaching will EVER make them say hi, but that doesn't matter. It takes the focus off her while giving her some practice, and the cats do interesting things that stuffed animals in that role wouldn't do, like sometimes jump down and go away while I call after them "Gusta! That wasn't very polite! You could have at least given Janey a High Five!" which got her laughing again. It's probably good for me too, as I struggle not to ever say things like that to Janey, but the rules are different for cats, who are not being affected in terms of their feelings or their long-term development, which, to make a run-on sentence, is one of the reasons I love cats. And we need silly, fun times with Janey. Lately she is really wearing me out. She's still "testing limits", which is the polite term for being extra naughty. I think it's a step forward in the very long view, but it added to often not getting good sleep and just the general life with a disabled child is enough to send me into long naps during my precious daytime alone time. So I have to grab fun with her when I can. And hey, maybe one day the cats WILL say hi back. Or at least master the high five.