Baby Einstein, Julie Clark and "crucial early years"

Janey is a huge fan of Baby Einstein videos. I am not. She loves the music, the toys, the soothing voices, the silly puppets, the whole bit. She's way past their target age, but of course not developmentally that far past, although somewhat even there. We let her watch them, including some in French I bought by mistake at a yard sale.

In every single Baby Einstein video, the founded of Baby Einstein, Julie Clark, gets on and talks about how great she is. Of course, not literally, but that's the message you get. She has two adorable blond girls, who are on the videos a lot, and she says in her sweetie-sweetie voice essentially that if you use her entire line of products, your child will be perfect. Again, not literally. She actually talks about how they are used to INTERACT with your child. Parents are shown interacting, which mostly seems to be pointing to the TV while a baby stares at it. Sure. Like those parents aren't hurrying into the kitchen to make up a cup of coffee and have 10 minutes to read the paper while the kid is entertained. Or maybe they aren't. Maybe THAT'S why I've got an autistic daughter! And of course that kind of message is the hidden one. You want your kid to be NORMAL, don't you? And not just normal, but BETTER than normal? Here's a shortcut way to do that!

And that gets to something that has been bothering me lately---the whole notion of those "crucial early years" And especially as that concept relates to autism. I see articles all over about how to diagnose autism in very young kids, so you don't miss those early years to work with them and make them "normaler" It bothers me for a couple reasons. One is that Janey was a late bloomer when it came to autism. She was not diagnosed until she was 3 years, 4 months, and although I might have been terribly wrong, I don't think she showed serious signs until just before she turned 3. She was discharged from Early Intervention at 3 with few concerns---she has been in it for her motor delays only. There were little oddities, of course, but she was certainly not a slam-dunk, anyone could see it autistic child until that age. So we missed a good potion of those "crucial" years. And then I took what was probably a slacker approach. She got an IEP, she started therapies, but I didn't do a full court press. I didn't insist on 25 hours of ABA a week. She was not even in a full day preschool for the first 2 years (although I was angry about that, but chose to leave her at the school I loved instead of move her to another one where she would get a full day). I didn't ignore her autism---you can read this blog that started right after she was diagnosed if you want to decide for yourself---but I didn't go as all out as I could have.

And why is that? Partly because I was just not sure that I believed any one approach deserved that much of her time. I think ABA is good, done well, which it took us a long time to get done well (thank you, Mr. Ken!). I think strong teachers are good (thanks to all of you!), but I just don't think there is any one thing that needs to be done in huge amounts to "fix" Janey. It's partly that I think it's both too late and not too late. It's too late because although I am not sure what caused Janey's autism, I am pretty sure it's something that happened when I was pregnant, or long before that, when some autistic little genes came together somewhere in Tony's and my ancestors. It's not too late because I think one of the hallmarks of autism is a delayed learning period. Janey still learns new things all the time. It's slow to see, sometimes snail slow, but I see her using words she hasn't before, I see her becoming closer to being toilet trained, I see her accurately "reading" her videos to see which one she wants, I see her asking more easily for what she needs, I see her catching balls and running like a champ and getting excited when I tell her school is in 4 days.

I don't think Janey is going to catch up, to be "normal". Of course, I dream of it. Of course, I hope I'm wrong. But I don't think it's fair to her to spend her whole childhood in pursuit of that dream. If she can be happy, if she can enjoy life, on the days I see that dream within reach, she is living a valid life right now. Despite what I think Julie Clark would say.

The Night Siege

It's one in the morning. Janey wakes up, and as always, comes to me. She wakes me up and says "Baby Einstein!". I say "It's nighttime now. We don't watch videos at night. We sleep at night. Snuggle down next to me and let's sleep". Janey says again, in a louder voice "BABY EINSTEIN". I repeat my lines. Janey kicks me. I tell her to stop and go to sleep. Variations of this repeat for a while, then she wakes up Tony. He says what I have said. We both lay down with her between us. She kicks up both, screams "I WANT BABY EINSTEIN!". She tries a little variation, by doing what is so often done to her, modeling the correct response "I say...YES!" We repeat tiredly the lines about it being nighttime, time to go to sleep. We then try ignoring. That only makes her more determined to get her point across. Several times she attempts to get up and put on the DVD herself. We bring her back to bed. It is now 2:30am. Tony has to get up for work at 4:30. I have to drive Freddy to the bus at 6. We both are at the point where tired doesn't even begin to describe it. Janey is wide awake, with the one thought in her mind. We look at each other, and wordlessly, Tony gets up and puts on Baby Einstein. Janey delightedly watches it for a few minutes, and then goes to sleep. She sleeps until 6:30, when she gets back up and asks for, yes indeed, Baby Einstein.

Now from Janey's point of view, as best as I can figure it. Janey wakes up. It is dark, and she isn't next to Mama. She gets up to go to Mama. In her mind, the Baby Einstein video is playing. But she needs to see it, to refresh her memory of some certain part, to tickle her brain, to scratch the mental itch which is bothering her. She doesn't have distraction techniques. When she wants Baby Einstein, she wants only that. She uses her words, as she has been taught, to tell Mama what she wants. Mama doesn't answer right. Mama must not get how important this is. She asks again. Mama again is saying no. Mama must not understand the question. She will tell Mama how to answer "I say...YES!" Mama laughs a little at that, and still says no. She decides Daddy might be the one to ask. He says no too. Meanwhile that need to see Baby Einstein is getting worse and worse. Mama and Daddy keep talking about dark, and sleep, and tired. Those words don't mean much. They are missing the essential point, that Baby Einstein must be watched. They tell her to sleep. But it's impossible to sleep. Time goes by---some hazy amount of time, and finally they see the light and put on the DVD. Janey sees what she needs to see. Her mind is quieted. She goes to sleep.

What lessons are learned here? I have very little idea. I've learned, over and over and over, that regular parenting techniques don't work on autistic kids, usually. They don't want to please you. They don't always feel tired in the night. They don't have the ability to shut off thoughts, or replace them with other thoughts. Often, there is a voice in my head telling me the "right" thing to do. "Don't give in to her! You need to stand firm!". But there is my body, saying I must sleep at all costs, Tony needs to get sleep before he goes driving on 128 at 5am. WE HAVE TO SLEEP. What good did the hour and a half siege do? No good. Janey didn't learn a lesson. Other times, when it was perhaps the weekend and we needed to get to sleep less, we've outlasted her. It has taken sometimes up to 6 hours. And she sleeps for a few hours, wakes and is in a terrible mood, and wants the same thing she wanted when she went to sleep.

And we have other kids, and jobs, and other parts of our lives. What I think of collectively as "The Books" and "The Experts" might say we should never have given in. But those books and experts always seem to deal in isolation---there is only the autistic child. There is no need to sleep, no older kids that need rides or forms signed or attention. No jobs. They also assume autistic minds are like regular minds in some core ways that I don't think they are. Janey doesn't seem to learn from the past as other kids do. She was not thinking "Gee, they don't seem very happy I woke them up. They aren't putting on my video. I should just go to sleep and not try this again". She is thinking one thing, and one thing only "BABY EINSTEIN".

And so another day in a half dream state, barely awake. Janey, as always seems to be the case, is bright and awake and shows no effects of lack of sleep. And so we go on.

A day's worth of talking

I thought I would try to write down everything Janey said in my presence today, to illustrate what her talking is really like, and to save for myself to see if it changes over time. I'm not sure I got everything, but I got a good sample. I'll divide it into types...

Asking for things---

"I want Baby Einstein"
"I want Cat in the Hat"
"I want The Kangaroo Hop" (a song on a Pooh video)
"I want straw box. YES!" (she sometimes adds on the yes to illustrate how I should answer)
"Disney Sing-A-Long" (she leaves out the I Want a lot too)
"Goldfish"
"Chocolate Bunny"
"Toothbrush! I want Toothbrush!"
"I want go see Pino" (Pino is her uncle that lives upstairs)

Delayed echolalia----(most all of this was on the way home from school in the car, and most of these lines were from The Cat in the Hat Knows a Lot about That, a current favorite.)

"With no chance of relief"
"It's me, the Cat in the Hat!"
"We just need an idea"
"I can't hear ANYTHING"
"Not MY kind of food"
"I can hear the bats" (this one was after an ambulance went by, and at first I thought it was in reference to that, but then she said it about 40 more times on the way home)
"Looking for rabbit droppings" (I have no idea where this one came from!)

Lines she has learned, but used properly

"I don't like it" (this was in the hall in the morning at school, when it was loud. I told one of her teachers that she said this, and they told me it was something they had worked on yesterday, saying that when she didn't like something. I was happy with that one)

regular echolalia
"I'm proud of you" (when I said that, because I was proud she said "I don't like it"!)
"Do you want cheese?"
"You are being pretty silly"
"Hippity hop out of the car"
(these are all right after I said the same thing, repeated back in the same tone)

Maybe original speech

"The disk is white" (this was interesting---she asked for Disney Sing-a-long, which I put on, but then said that, and brought me a Baby Einstein disk, which was indeed white. It's pretty rare for her to say something like that)

Overall, a pretty good representative sampling of how she talks. Mostly, she asks for food or videos, or repeats lines from books, videos, things we say, etc. The Cat in the Hat things she said on the way home were all said many, many times during the 25 minute drive, and always in the same tone and with the same emphasis. I was encouraged by the "I don't like it" and "The disk is white" today. I'm struck by how very little she says, if any, passes along information or asks for information. Or asks for anything abstract, although she does often say "I want snuggle in Mama's bed" when she's upset.

I never know how to reply to the delayed echolalia. Should I ignore it, as it's not really useful speech? Should I say it back to her? Should I act like it's a serious comment or question? I do that a lot, like when she said "I can't hear ANYTHING!", I say "Is it too noisy in here? Are the sounds too quiet? Why can't you hear?" as if I thought she was really commenting on her hearing---just to try (in vain) to spark conversation. Or should I try to figure out why she's saying that particular thing at that particular time, and work with that, as when she said "I can hear the bats"? I think that was originally sparked by the odd sounding ambulance, which was making an odd hollow sound---maybe it sounded like the bats did on her show. I asked her that "Did something make you think about bats and how they sound?" but of course got no reply. I get a little frustrated with the endless phrases, because I don't know what the best way to respond is, how to work on turning them into useful speech.

I do know how lucky I am that Janey talks at all, and I am very, very grateful for that. I know other girls with autism function overall at a lot higher level than her, and don't speak, and I keep that in mind every time I hear her voice.