Rarer in Girls...Life with my daughter Janey, who is twenty and severely autistic
Thursday, December 13, 2007
Talking more today
Janey seemed to talk more today. It's hopeful when that happens, but it probably sort of makes us too hopeful sometimes, like somehow she will snap out of this as suddenly as she snapped into it. She said "I want to see Micio" (her uncle's cat) and sang most all of Jingle Bells, and told her teacher she wanted more water. 6 months ago this all would have been routine, but now it made it seem like a great day. It snowed a lot, and she seemed to like looking at it. She draws all the time, and I keep looking to see if she is drawing actual things, it's getting closer. It's interesting loops and lines and designs right now. I feel a little more hopeful about things. It is funny how it would seem wonderful now if she could just be high functioning autistic, or Aspergers, or many things. It's so scary when she doesn't talk at all. Still a lot of the "insane laughing" as we call it. It's disconcerting.
Tuesday, December 11, 2007
Inclusion
Janey is in an inclusion classroom. She was there originally as one of what they call community members---kids without any IEP or disabilities that act as models to the kids with them. Now she is one of the kids on the other side. I love inclusion. My sons both went to the same school, and I think everyone involved benefits. I love seeing how the other kids love Janey. She is mobbed as she arrives. I wonder sometimes what she gives back. She doesn't talk much, or join into their games. But there is always someone holding her hand, someone wanting to play with her. The teachers tell me that all the parents they have spoken to mention Janey as a friend. It makes me feel like she is part of a group---and I feel very lucky that she is at the school she is. When she was diagnosed this past Saturday, we were told that we should put her in another school---that inclusion doesn't work well for kids with autism---they need more intensive services. I am inclined to ignore this advice, but like everything else lately, I am struggling with self-doubt. Is Janey missing out? Is she some kind of classroom pet---everyone loves her because she doesn't demand much? Is inclusion just cheaper for the school district? When I see her at school, I am sure, but when I am home, I'm not sure. Yet another tough decision the next few months has in store for me.
Thankful but wishing I could not have to be
People have been wonderful to me the past few days. Janey's teachers are so incredibly supportive, my friends are there for me in every way, people have been offering help right and left. I am very grateful, but I have an inside feeling that I wish I didn't have to be in a situation to be thankful. I would rather be helping someone else. I don't like to be helped, and I wish I didn't have to be. I wish Janey and I didn't need the help.
The scariest thoughts
I am not the most scared of autism. Although it's not going to be a picnic, I feel somehow we will get through it and Janey will be happy, which is what I mostly care about. My scariest thoughts are if it's not autism really, if it's the other things that were hinted at during her assessment. She needs an MRI. When she had one at 18 months, there were some abnormal spots. No-one explained them well to me. We now need to know what they are. She needs a EEG. She might be having absence seizures. We need to figure out why her heart sounds funny. I fear in my darkest moments she has some kind of horrible genetic disease that will take her away from me. My sister lost her love last month to Marfan's Syndrome and complications of heart surgery. He was 40. He was a special, one in a million person. It does happen. People have terrible things happen to them, for no reason at all.
The Grinch
We had a nice moment this morning. Janey found our copy of The Grinch That Stole Christmas, and sat and listened to the whole thing while I read it. It had a lot of rhymes, which helped. I love the story and she seemed to love it too, and the pictures. She looked it over for a long time after we read, and was especially interested in the ladder the Grinch took to get up on housetops. Times like that are so wonderful. I feel like I am doing what I am supposed to be doing for a minute. Of course, every time I do something like that, a million other things go undone. My 10 year old wants to talk about books. The dishes are a fright. There is laundry in the cellar sitting around unfolded. I am not dressed yet. I need to pack things I have sold on ebay. Now while I write, Janey is finding things to draw on. I am not researching ABA. I am not working on a list of questions for my doctor. I am not thinking about what to do next, or preparing for Janey's IEP meeting next week. I am just enjoying her. It should be fine to do, but in this world of autism, I don't think it is.
Note from many years later, in 2016, Janey being 12 now! The Grinch That Stole Christmas is still almost the only book Janey will listen to in full. It's funny how things like this often don't change. I remember how thrilled I was that she listened to it and looked and the pictures, and how I thought that was the start of a reading life for the two of us. Instead, it was just that that particular book is the one book she really likes.
Note from many years later, in 2016, Janey being 12 now! The Grinch That Stole Christmas is still almost the only book Janey will listen to in full. It's funny how things like this often don't change. I remember how thrilled I was that she listened to it and looked and the pictures, and how I thought that was the start of a reading life for the two of us. Instead, it was just that that particular book is the one book she really likes.
Janey loves to draw
Janey adores drawing. Not really drawing yet, but scribbling, and the scribbles are getting more interesting. I love to have her draw, but she finds ANY writing instrument and ANY surface to draw on. I try to keep all crayons, pencils, pens, etc, out of her reach, but with 13 and 10 year old brothers in the house who also love to draw, it's hard. It feels sometimes like living with a mad graffiti artist. Every day I find more surfaces covered. I have piles of paper out at all time, but she prefers other surfaces. Nothing I say or do makes her stop this hobby. It's getting extremely tiring.
Note from many years later, in 2016---Janey is now 12. It's hard for be to believe Janey ever liked drawing. She hasn't drawn in years and years and years. I think this entry was the high of her interest in any kind of writing utensil on paper. She doesn't ever have an interest in writing or drawing anything. It's kind of hard to think about. I think we assume with our kids, that things will be on an uphill trajectory---that the drawing will get better, the writing will develop, that it all will get better. Sometimes, it doesn't. I don't mean this to be discouraging, as for most kids, it does. But in this particular case for this particular girl, no.
Note from many years later, in 2016---Janey is now 12. It's hard for be to believe Janey ever liked drawing. She hasn't drawn in years and years and years. I think this entry was the high of her interest in any kind of writing utensil on paper. She doesn't ever have an interest in writing or drawing anything. It's kind of hard to think about. I think we assume with our kids, that things will be on an uphill trajectory---that the drawing will get better, the writing will develop, that it all will get better. Sometimes, it doesn't. I don't mean this to be discouraging, as for most kids, it does. But in this particular case for this particular girl, no.
A few minutes later
I've given in to TV. I am desperate for a break. Janey is watching Sesame Street. I justify this by the fact she did say PBS Kids---she asked for TV! Sure. I am guilty all the time---about everything.
Everything is happening fast. I got a speeded up apointment last Sat. with a team of a psychiatrist, developmental pediatrician and speech pathologist. They all agreed---Janey is autistic. They think there is more, though. She might be having seizures. She might have a brain abnormality---she had an MRI at 18 months to try to figure out her late walking---she finally walked at 2. Her heart sounds like it's in the wrong place in her chest. We see her pediatrician today. I haven't seen him for over a year. This is partly because Janey is very healthy in terms of the usual things---no colds, fevers, throwing up---she is extra healthy. Also, I was having a year of denial. After Janey started walking, and was talking more and more, I decided she was fine. And she pretty much was---until a few months ago, when her talking took a nosedive and she started acting more and more oddly. She started preschool in September, not as any kind of special ed student but as a regular ed preschool kid at the inclusion school her brothers went to. She is in the same classroom her younger brother was in 7 years before. It didn't take long for the teachers and therapists in that classroom to realize they had a special ed kid hiding in a regular ed label there. I had hoped somehow they would never guess. Mostly because I hadn't let myself guess yet.
People all care. People have been wonderful the past few days. It helps a lot. However, I still feel very alone. They aren't responsible for Janey---I am. I am the one sitting here writing while she runs around the house saying "A pie, a my, a pie, a my, see, a lee, see, a lee" She loves rhyming. But it's not fun rhyming---it's instead of speech, not a great phonics tool to help speech.
I am tired of autism already, and it's only been 3 days.
Everything is happening fast. I got a speeded up apointment last Sat. with a team of a psychiatrist, developmental pediatrician and speech pathologist. They all agreed---Janey is autistic. They think there is more, though. She might be having seizures. She might have a brain abnormality---she had an MRI at 18 months to try to figure out her late walking---she finally walked at 2. Her heart sounds like it's in the wrong place in her chest. We see her pediatrician today. I haven't seen him for over a year. This is partly because Janey is very healthy in terms of the usual things---no colds, fevers, throwing up---she is extra healthy. Also, I was having a year of denial. After Janey started walking, and was talking more and more, I decided she was fine. And she pretty much was---until a few months ago, when her talking took a nosedive and she started acting more and more oddly. She started preschool in September, not as any kind of special ed student but as a regular ed preschool kid at the inclusion school her brothers went to. She is in the same classroom her younger brother was in 7 years before. It didn't take long for the teachers and therapists in that classroom to realize they had a special ed kid hiding in a regular ed label there. I had hoped somehow they would never guess. Mostly because I hadn't let myself guess yet.
People all care. People have been wonderful the past few days. It helps a lot. However, I still feel very alone. They aren't responsible for Janey---I am. I am the one sitting here writing while she runs around the house saying "A pie, a my, a pie, a my, see, a lee, see, a lee" She loves rhyming. But it's not fun rhyming---it's instead of speech, not a great phonics tool to help speech.
I am tired of autism already, and it's only been 3 days.
Autism as it happens---day 3 after diagnosis
My daughter Janey was diagnosed last Saturday, Dec. 8th, with autism. She is 3 years old. I am still in the early, unformed, scared, without a philosophy or plan stage. I don't know what else to do but do what I've always done in crisis---write. I am going to write about what is happening with her as it happens.
Today Janey woke up at 4:30am, as usual. She came to my bed laughing. She laughs a lot---usually laughter without cause that we can see. I picked her up and put her in bed with me, in the vain hope she would go back to sleep. No such luck. She used her most clear sentence lately on me---"I want a chocolate milk baba". My husband got her one. I know there are problems with milk and autism. I need to sort that out. Right now, I can't help but respond when she actually talks to me. She drinks the bottle, and when she's done---doesn't fling it across the room as she has usually done lately.
I decide to try to engage her, although it's very early. I get her animals---a box of wooden animals we play with. I try hard to get games going with them. She repeats a few of the names after me---pony, chicken. I sing songs about the animals, and she hums along. She loves music. It's soon apparent she isn't too into the animals. I put them away and try for sleep again.
She lies next to me laughing and engaging in her other new trick---swishing saliva in her mouth. I can't stand that trick. I ask her to stop, for all the good that does. She laughs and laughs. Then she talks---like most all her talking now, about something that has nothing to do with anything. She says "Junk food...Junk food is yucky...I want junk food!" I ask her who has talked about junk food. It's a reflex---she doesn't answer, she never does. It's just another of the mysteries my whole life seems to be lately.
Now she is singing to herself---"Wimbaly, Wobbly, Woo"---a song she knows from school. I try to sing along, but that ends her singing fast. She switches to a phrase she likes lately "My cat..." This seems to have nothing to do with her actual living 3 cats, or toy cats, or any cats at all. Now she starts rhyming---"Cat, lat, mat"---"pie, hi, my" Now "On PBS Kids" I am feeling guilty to be writing and not engaging. I will stop for now.
Today Janey woke up at 4:30am, as usual. She came to my bed laughing. She laughs a lot---usually laughter without cause that we can see. I picked her up and put her in bed with me, in the vain hope she would go back to sleep. No such luck. She used her most clear sentence lately on me---"I want a chocolate milk baba". My husband got her one. I know there are problems with milk and autism. I need to sort that out. Right now, I can't help but respond when she actually talks to me. She drinks the bottle, and when she's done---doesn't fling it across the room as she has usually done lately.
I decide to try to engage her, although it's very early. I get her animals---a box of wooden animals we play with. I try hard to get games going with them. She repeats a few of the names after me---pony, chicken. I sing songs about the animals, and she hums along. She loves music. It's soon apparent she isn't too into the animals. I put them away and try for sleep again.
She lies next to me laughing and engaging in her other new trick---swishing saliva in her mouth. I can't stand that trick. I ask her to stop, for all the good that does. She laughs and laughs. Then she talks---like most all her talking now, about something that has nothing to do with anything. She says "Junk food...Junk food is yucky...I want junk food!" I ask her who has talked about junk food. It's a reflex---she doesn't answer, she never does. It's just another of the mysteries my whole life seems to be lately.
Now she is singing to herself---"Wimbaly, Wobbly, Woo"---a song she knows from school. I try to sing along, but that ends her singing fast. She switches to a phrase she likes lately "My cat..." This seems to have nothing to do with her actual living 3 cats, or toy cats, or any cats at all. Now she starts rhyming---"Cat, lat, mat"---"pie, hi, my" Now "On PBS Kids" I am feeling guilty to be writing and not engaging. I will stop for now.
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