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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.

Thursday, June 23, 2011

In a circle

Janey had her year-end kindergarten program today. She will be going to 1st grade in the fall, and this summer, she will go to a summer program for five weeks. I am feeling good about 1st grade---she will have great teachers, as she did this year, and I think (hope) it will be a smooth transition. I am not as sure about the summer program. The summer program here has a terrible reputation, but supposedly it's been completely overhauled. I will see what I think. It scares me to death to have Janey going to a school she's never been to (the summer program is held at a different school across town from her school) with teachers she doesn't know and I don't know. I am not sure exactly what I'm scared of. Everything. Having a child who can't talk in a meaningful way going off all day to a place you don't know about is very, very, very scary. I will drive her, I will see how things look, I will stay around at first, but I am still scared.

Janey had a good year in some ways. She was happy much more of the time than in previous years. She seemed to learn classroom routines, and she seemed to mature. Seeing her on stage at the program today, although her ABA therapist was right there with her holding her hands and keeping her in place, she was smiling and seemed more engaged. She did yell out with her fairly new autistic sounding yell that seems like a talking substitute a few times, but overall, she looked good.

In other ways, she made little progress. This is not the fault of the school, or her teachers, or I think me, or certainly not her fault. She just has a very hard time learning. Or if she is learning, she keeps it inside. I would say her talking is no better than, and probably worse in some ways than a few years ago. It's mostly single words, except for the delayed echolalia. She still can't answer Yes or No to questions. I think she understands us a bit more, and follows directions a bit better, but it's still very, very slow progress.

Tonight felt like a throw-back to the bad old days. She is screaming and crying non-stop. Maybe she understands on some level that her kindergarten days are almost over. Maybe something else is bothering her, that she can't tell her about. As I write, she is on my bed, screaming "Don't worry! I'll get you out!"---one of her Angelina Ballerina phrases, and then saying "Baba! Baba" for bottle (yes, she still drinks chocolate milk in a bottle. She can use a cup as well as any 6 year old can, but once a day or so, if a bottle makes her happy, she will have a bottle. Not that anyone said anything...) On nights like this, it's easy to feel overwhelmed, discouraged, like we are treading water and will drown some day. I hope not.

Wednesday, June 15, 2011

Feeling sad

I'm feeling sad tonight. Janey lost a tooth yesterday. It had been loose for a few days---I only happened to notice it because I saw her lip had a little blood on it, and saw a tooth was loose, her first one. She played around with it for a couple days, and last night, when she was right next to me, it must have fallen out and gotten swallowed, as I couldn't find it. She seemed fine last night. I had a few moments then, thinking about the Tooth Fairy. I didn't attempt any Tooth Fairy action---without a tooth, she'd understand it even less than she would otherwise, and to be honest, she wouldn't get it a bit even with the tooth. And she has no idea what money is, and is indifferent about presents, so I just decided to skip it. I was okay with that. But tonight, as I was trying to get her to sleep, she kept saying something I didn't get at first. Finally I realized it was "Tooth!". She grabbed my hand and put it where the tooth had been. Over and over and over and over and over. I knew what she was asking---where the heck is that tooth? Why is there this gap in my mouth? How can something that is part of my body just be gone like that? She kept looking at me with a scared, questioning look. I told her over and over all I could think of that she might understand---"Everyone loses teeth! Mama lost some teeth when she was 6, William lost teeth, Freddy lost teeth, Daddy lost teeth, even kitties lost teeth! A new tooth is already coming! It's okay---don't worry!" But God knows what she understands of that. Very little, I think. All she knows is that something has changed, and she doesn't know why. And that look on her face just about did me in. I can't help her. I can't say the words to make it better, because words don't work with her. I can hold her, and snuggle her, and try to protect her. But there are going to be so many times in her life like this. And some day, I won't be there. And my poor baby girl is going to some day be scared and not have anyone there that can understand her. And that is just almost unbearable.

Tuesday, June 14, 2011

I don't know how you do it

"I don't know how you do it" is something I hear fairly often. It doesn't bother me, anymore anyway. I know it's something people say when they don't know what to say---it's meant as a compliment. I used to always think to myself "What choice do I really have?" but lately I've come to think of it, in my mind anyway, as a question---maybe not one that the person actually consciously wants answered, but a question to themselves---"Could I do it? Could I handle it?" Today I thought of an answer. The answer is "It's both harder and easier than what you would think".

Let's take the easier first. It's easier, in short, because you get to get used to it gradually. If I had no time to work up to it, if someone said to me "I'm about to give you a 6 year old daughter. She's going to be autistic. She will also be retarded. She won't be able to talk much, she will cry a lot, she will have extreme trouble with learning anything academic. She will need constant supervision, because she will be into everything and constantly in danger of hurting herself someone. You'll have her for life"---well, I would probably be eying the nearest high bridge. But I have had a while to get used to it, and I've learned that much of it really isn't that bad. When Janey is happy, when we can figure out what she wants and are able to give it to her, the autism and retardation matter very little. The retardation, maybe at this point not at all, to be honest. It makes little difference in the scheme of things if a 6 year old knows her letters, her numbers, if she can talk well, if she is understanding complex ideas. In the future, it will limit her, but right now, she is who she is, and just the fact she doesn't seem to learn well in some areas doesn't much bother me---most of the time. And the autism, at least parts of it, are not that bad either. The social parts are just her. She isn't going to say goodbye or hello readily, she isn't going to make great eye contact all the time, she likes the same videos over and over---I can handle those things. And in many ways, she's a delight, when she is happy. She is beautiful and funny and loving much of the time. She brings us a lot of joy, often. It's not like our lives are ruined by her (at least most days we don't feel that way) She is who she is, and that's the part that is easier.

But it's harder than you would think, too. What is harder than people picture is the endlessness of it. People get tired after taking care of her for an hour or two. And then they get to pass her along. They get a break from her demands, her tears, her confusing requests (things like handing me a bowl and saying "BOWL" a hundred times to try to get me to put some unknown thing in it), her constant quest to get into the fridge and take things out and toss them around, or to throw all her DVDs on the floor, or to open her diapers and make a mess, or to try to escape, or to do any of the things she does. But we don't get a break, except for school (which we are glad to get, let me tell you). Not ever. She is our responsibility around the clock. Imagine when your child was at their worst terrible twos---no impulse control, prone to sudden tantrums, etc. Then imagine that lasted...forever. And that your child was too hard for anyone to watch outside the family---that they never got invited to other people's houses, not because the other people are mean or don't like her, but because they are scared---they don't think they could handle her, and they might be right. That is the part that is harder than anyone can picture unless they have had a child like Janey.

But still, there are people that I would ask the How Do You Do It question to. People with medically fragile children, people who know they could lose their child, people who are single parents with an autistic child, people who have a child like Janey but not a school that they can trust. And they would probably say to me what I am saying to others---it's both easier and harder than you think.

Wednesday, June 1, 2011

Reactions to a video

I watched a YouTube video last night which really got to me. It was about Robert McNeil's (the PBS reporter) grandson, who is autistic. For whatever reason, I haven't watched a lot of video about other children with autism. Nick, the grandson, is very much like Janey. He's a bit higher functioning, talks a bit more, but his behavior, mannerisms, even little things like sleeve chewing and repeating and facial expressions, are so much like her. It made me think how it's almost like a tribe of people, the autistics. They are all separate, as autism makes people be, but they have so much alike. And why? I didn't agree with the vaccine ideas in the video, but it seems like there must be some reason. What makes these kids, so alike but popping up what seems like randomly? Here's the link to the video...

Another thing that really got me---the interview with Nick's 10 year old sister. She was too young to filter out the despair and sadness that goes along with having a brother like Nick. And the moment when her grandfather tries to minimize her pain was painful for me to watch, but so true to life---the words people say with all good intentions that as adults, you learn to brush aside, but that she addressed.

The bus riding was an example of what we all do to just try so hard to keep our children happy. We do things that might seem crazily over-indulgent at times, but that really are just intended to let a little kid have a happy part of their day, something that surely any parent would want for their child.

Anyway, what is my conclusion? I don't know. It helps to know about others out there doing what we do (and here I will insert a huge shout-out to you, Michelle!). It's scary to think about how many kids are so similar to Janey, for reasons we don't understand. And I just want to say to anyone out there reading this and raising a Janey, or a Nick, or a Lindsey---whether we know each other or not, we are all in this together.