"Talker Machine?"

Janey does things her own way.  We've learned our lesson through the years, and trying to force her to do thing our way doesn't go over well.  This is proving true with our foray into TouchChat.

Last week, Janey's wonderful teacher synched TouchChat at school with our version at home, and also added to both buttons for our family and friends (and cats).  It's fantastic having a way finally to talk to Janey about specific people at school, and to let her talk about people at home while she's at school.  I've been playing around with TC constantly on my own, figuring out all its features.  And we've had it available for Janey to use at all times.

So, how is she taking to it?  It's a mixed bag.  I'll have to say it can be frustrating.  The most common thing Janey does with the program is pick the exact middle button, over and over, though screen after screen.  Doing this creates the sentence "I don't want to listen to CD"  Maybe this is a message Janey wants to get to us, but the thing is, she has basically never seen a CD, never listens to them, and when I showed her some and tried to figure out if she knew what they were or did, she showed no interest.  So like with a lot of things, I think pressing the middle buttons has become a routine, not really a way to communicate.  And that's fine.  If that is a way Janey enjoys using her "talker", and it makes her feel comfortable with it, I am happy.  But I do wish she'd be a little more interested in exploring other possibilities.

I've been doing a lot of reading about getting started with AAC, and modeling the use of the device is a big part of it.  So I am often using it to either say things I want to say to Janey, or to model what she might want to say with it.  For example, if she is irritated we don't immediately take her for a car ride when she wants to, I make it say "I am frustrated" or " I want to go to the store" or "I want to wear shoes" (another way she asks for rides).  This doesn't seem to encourage her to use TC to talk to us, but it does seem to be helping her organize her verbal talking, which is wonderful.  We've heard her use more complete sentences lately than usual.  The other day, she said "I want you to clean my foot" to me, extremely clearly.  The usual way she'd ask something like this is to point to herself and say "you want to clean feet?"  I was startled and thrilled.

The tricky thing with getting Janey into TC is that she is at the height right now of a teenager phase of not wanting me around often.  The most common thing we hear lately is "Want to go away?"  She wants to be alone when she watches her videos, or plays with her regular iPad watching YouTube on her bed, or basically any time we are around harshing her mellow and getting in her face.  So having me cheerily constantly around modeling TC is not really how she wants to spend her time.  I'm finding the time she's most open to it is when she wants something from us.  If you've had teens ever, you know that is about as typical as it gets.  When she wants a ride, or wants us to cook her something, or wants a certain video, she is much more motivated to at least watch us use the TC than other times.

Most nights, as I lie down with Janey to snuggle as she falls asleep, something I do most every thing, I've been having the TC open and playing around with her, saying silly things to each other like "I'm so over that!" and "Whatever!"---one of the great features of the program is it lets teenagers say teenage things like that.  Last night, though, I didn't bring it with me for our snuggle, as Janey has been resistant to it throughout the day and I didn't want to irritate her.  But after we were snuggled down, Janey said "Talker machine? Want to get talker machine?"  That was a wonderful thing to hear.  Whether Janey is using AAC in a conventional way or not, we are having fun with it, and I'll continue to model and play around and do what I can to give Janey a way to augment her verbal talking.

Autism Ten Years In

Janey, age 13---Ten Years In

Last month, the tenth anniversary of Janey's diagnosis with autism passed unnoticed.  I realized it a few days ago, and I had a thought.  What if, on that December day in 2007, I'd been able to have a glimpse forward to now?  What would I have thought?

I will be honest and say I might have been quite discouraged in some ways.  Janey talks now probably less than she did at the time she was diagnosed, and far less than she did when she was two, before her big regression.  Her academic growth has been very, very slow.  She doesn't read, or write, or add or subtract or reliably do things like identify shapes or colors.  She is not fully toilet trained.  She still needs a huge amount of help with self-care.  In short, if you look at measures like standard IQ testing or academic achievement or potential to live an independent life, she is not one of autism's success stories.  That would be a hard thing to have known in advance.

However, in some ways, I think I would have been quite encouraged.  My glimpse forward might have landed on any of quite a number of happy times just this past weekend.  Maybe I'd have seen us all watching Weird Al videos, together on the couch, laughing our heads off.  Maybe it would have been the big Thai take-out feast we had as a pre-back to college treat with Freddy, Janey joining in with huge smiles and her usually adventurous appetite.  Or I might have just seen one of the many times Janey's engaging manner and enthusiasm for life improved our days.

While talking to my friend Michelle about these thoughts, we touched on what I think many out there have realized.  There are different kinds of autism.  I truly don't think it would have made a huge difference what we did in terms of Janey's speech and academic development.  I see other kids that are in the same program as her, kids who started at a baseline like hers or in some cases, far lower, and who now read with ease and speak in a way very close to typical.  However, Janey has something that I don't think all kids starting where she does develop.  It's hard to put my finger on.  It's not really social skills, or ability to engage with others, but it's a personality that in some ways is very unlike the stereotypical vision people have of autism.  In that way, she has progressed.  I would hope if I were able to glimpse forward, I'd have seen that---the spark, the joy, the humor.

When Janey was first diagnosed, fear and hope battled in my mind.  I had hope that she would regain all her speech, that she would somehow progress to the point she left autism behind.  I had fear that life for her would be a joyless life, that she would never be happy---and because it's very true that a mother is only as happy as her saddest child, I would never be happy either.  Now, ten years later, it is fair to say I have far less hope about Janey's potential for typical progress.  However, the fear is also much less.  The Janey that exists today is not defined by what she can't do.  Of course I fear for her future, often, but I also delight in her joys.  In many ways, I have changed more in the ten years than Janey has.  Even if I had been able to look forward, I would not have looked at Janey with the same eyes I do now---eyes that see her for who she is, a valuable, special, frustratingly but steadfastly complex and unique. 

Here's to the next ten years.

Will she enjoy it? Will it benefit her?

Yesterday, on Halloween, I found myself desperately wanting to take Janey trick-or-treating.  I loved Halloween as a kid.  It was a day where everything was turned on its side, where you could go to people's houses and knock and get candy.  I loved the whole process, especially coming home with a big bag of candy and sorting it out and looking it over.  When the boys were younger, I adored taking them out on Halloween.  I read a few days ago about a local college having something called "truck or treat", where a lot of cars park and you can go from car to car trick-or-treating, and I made plans in my head to take Janey.

Yours truly, with my sister and father, on a long ago Halloween

However, we didn't go.  Janey is a very early to bed girl, and she was very tired by the time it was dark.  She was also very engaged in watching "Mickey Mouse Clubhouse", as we recently got new channels on the TV.  I struggled with myself---should I push for it?  Should I take her?

When trying to decide, I used a few questions that I've recently started to apply when deciding what activities to do with Janey.  Will she enjoy it?  Will it benefit her?

Well, she might enjoy trick-or-treating a little, but at that particular time, no.  She really doesn't get the point of it, she was tired, and when I asked her (probably over and over) she showed no interest.  She's very capable to letting us know when she wants to do something, and she just didn't want to.

As for a benefit, well, no. Chocolate is the one food we don't give her, and going someplace to get a bag of candy that most certainly would include chocolate, which we'd have to fight to keep her from eating---no.  It could be argued that she might pick up some social skills, but it's a hugely isolated set.  Most of the time, you can't go around to people's houses or cars and say "trick or treat" and then get candy.  So any argument that it would benefit her was pretty weak.

When I started applying the questions to activities, it opened my eyes.  There's a lot I'd like to do with Janey, or like to have her get to do, which frankly are things that I want her to do, not things that will give her enjoyment or benefit her.  This past spring, we tried Special Olympics for a bit.  It might be great for some kids, but for Janey?  No.  She had no interest in it.  She is not competitive, she didn't interact with other people there, she didn't get exercise from it as she wouldn't readily participate.  It was nice to get outdoors, but we could do that any time and place.  I realized it was ME who wanted her to be in it, for reasons that had little to do with Janey. 

Janey very happy, headed to the store.

I'll contrast that with an activity Janey very much enjoys and benefits from---the daily walk to the store.  The store is a convenience store near us, which changes names constantly but is currently a 7-11.  The after-school walk there is Janey's favorite ritual.  She asks for it every day.  When we get out to the driveway to start the walk, she is literally dancing with excitement.  I hold her hand and we walk the short way to the store.  She goes in and looks over the chips for a long time.  She only ever picks out the same two or three kinds in rotation, but I know how just looking over a shelf of choices can be a thrill.  When she picks her chips, I then switch the big bag she picks for an identical small bag, and we talk about how they are the same.  She takes the chips to the counter, waiting in line if she needs to, she is patient while I pay, sometimes she'll say thank you to the cashier, she gets a lot of smiles, and then we walk home.  She eats the chips in the driveway while the colony cats of the neighborhood circle her legs to get dropped chips.  She is happy and engaged.  She is also learning---learning the rules of walking along a busy street, how we exchange money for products, how we act in stores, how we treat animals---lots of things.

There are other activities Janey enjoys and benefits from---car rides with music, cooking with Daddy, picking out and putting on videos, going to the library to pick up the books I've ordered online and of course going to school, the big one. 

I wish that Janey could participate in more activities.  But the truth of it is, when I think about it, I wish that for ME.  Not for her.  Her life, when I allow myself to broaden my view of what an activity is, is pretty full already.  In this age of Facebook, I've realized that sometimes what I've wished for are Facebook photo opportunities, a little.  I'd like her to do more of the "normal" childhood things.  But she is 13.  She's growing up.  By that age, she knows what she likes and doesn't like.  I think about myself.  If I had been made to participate, at that age, in sports, or in an art class, or in a dancing class, all things I have little interest in or talent for, I would have hated it.  So they would have failed the enjoyment question.  But would they have benefited?  Truthfully, by that age, no.  I am much the same person now I was then.  I don't like sports.  I am not artistic.  I don't like to dance.  And I knew my mind by that age.  I knew my limits.  Some might argue this point, but from what I've learned from my sons, kids by that age know what drives them, and Janey is not different from other kids that way.  It's very, very easy to tell what she loves and what she doesn't.

As Janey gets older, as her own path in life starts to become more defined, I need to give her the same respect we all deserve, the same right to find her own passions.  It's even more important for me to follow her leads, because it is far too easy when a child doesn't communicate in traditional ways to impose our own will on them.  I'm going to try to often stop and ask---will she enjoy this?  Will it benefit her?---and use those answers as my guide.

The Sticker Book

Recently, after being amazed by seeing Janey be tested as part of a research study, and after some surprising, great talking she's done, several thoughts are in my mind constantly.  One is how bored she might be.  Because her talking is limited, I think we often limit what we talk to her about.  Quite frankly, it can be hard to think of conversational topics when your conversation partner rarely talks back or brings up anything new.  So I've also been thinking about ways to expand her knowledge, to give her new ideas and facts and interests.

Puffy stickers

Janey is absolutely an auditory learner.  That seems to be rarer in autism than being a visual learner.  So much of what I read as advice for teaching kids like Janey assumes they are visual learners---picture schedules, communication devices that use pictures, choice boards with pictures---all that.  Janey prefers words.  She's made this quite plain, as plain as she is able.  I am the one that needs to figure out how to help her learn in an auditory way.

So---my inspiration for making a sticker book seems strange.  What are stickers if not little pictures? But when I had the idea of the book, I had a feeling I'd hit on something.  The trick is---the stickers are for ME.  I'm the one that loves them, I'm the one that learns well visually.  I'm the one that needs new ideas for talking.

And I love stickers.  There, I've admitted it---I'm a middle aged woman who adores stickers.  I always have.  So the idea of making a huge sticker book for Janey appealed to me very much.

Some Kawaii stickers!

I got started by ordering a sketch pad and a couple lots of stickers from Amazon.  I ordered a big pack of puffy stickers---sheet after sheet of different kinds, and a pack of stickers of the kind you put on cars, all assorted.  Then on Etsy I discovered something called Kawaii stickers.  I thought at first Kawaii was a brand, but it's actually Japanese for a concept much like "cute".  There are a HUGE amount of kinds of Kawaii stickers---I've since found a few online stores that sell them very cheaply, and I don't think I could ever run out of different types.

An animal themed page

I had a lot of fun sticking all the stickers I had so far in the book.  And then I gave it a try...I showed the book to Janey, picked a page at random and then a sticker at random, and showed it to her, and talked about it.  Talked about it in the way we've come to figure out she likes best---in a silly and highly enthusiastic way.  Several of her breakthrough sentences lately have been ones asking us to play various verbal games with her---pretending to sneeze, making high squeaky "monkey" noises, things like that.  The sticker I first hit on was a ghost.  I said something like "There's a ghost!  It goes WHOOOO HOOOO in such a creepy way!  See that silly ghost?"

A little bit edgy and weird for my near teen

Janey loved it.  We played with ghost noises for quite a while.  Then I switched pages and asked her to touch the sticker she wanted to talk about.  We were in a page of Shopkins stickers, and she found a picture of corn with eyes.  I talked that up a lot "That's so silly!  Corn never has eyes!  We eat corn!  It comes in cobs.  You like corn.  Let's find some more corn pictures!"  We found some more on that page, and some on other pages, and that led to other topics---one of the corn pictures featured a rainbow, and I started talking about colors, one had corn next to some other food, holding hands, and I talked about how they were friends...things like that.  Before I knew it, half an hour had gone by---a full and fun half hour.

Camping, cooking and Frozen

Since then, I've pulled out the sticker book every day, and Janey seems to be looking forward to it.  She finds her favorite stickers quickly, but is also open to new stickers.  I feel like I've increased how interesting and varied our talking time together is by a huge amount.  And...I have an excuse to look for stickers to add!

In the broader picture, the whole sticker book idea brings up a couple lessons I've learned along the way.  One is that Janey knows if we are enjoying what we are doing and are engaged in it.  I'm going to stick to a way of teaching that I like much more than one I don't, and with Janey's extreme ability to read tones of voice, she picks up on the fact I'm having fun, and she joins in.  Another lesson goes along with that well-used phrase "You've met one kid  with autism, you've met one kid with autism" All the visual schedules and picture-based AAC programs in the world don't change the fact that Janey learns by hearing.  And that I don't, and that I need to figure out how to bridge that gap, how to respect what she is learning every day a little more how to tell us.  If that allows me to indulge in a long-buried sticker passion---well, all the better.

Road Trip

This past weekend, we took Freddy back to college in Saratoga Springs, NY.  We were going to make it a one night trip, but with the early week reports of the blizzard possibly hitting Boston, we added Friday night on.  The blizzard didn't hit, but the two nights away made for a good little getaway.

Janey did extremely well with the trip overall.  There were many great moments.  She loves hotel rooms, and we stayed in two different ones (as it was too late to add a second night to the first one we booked).  She literally danced around with joy at her first sight of each one.  I've heard a few other parents of kids like Janey say that their kids love hotels, too. I'm not sure why.  Part of it with Janey is that hotel rooms tend to have lots of mirrors, and she very much enjoys mirrors, but I think part of it is just having a new little pocket world to explore.  She can go anywhere she wants within the room, and that gives her something new to explore on her own---something she doesn't get a lot of.

When we ate in public on the trip---one trip to Wendys and one to the hotel breakfast buffet, and when we went to the Target to get Freddy some last minute things, I realized something interesting.  It doesn't bother me when Janey gets stared at anymore, not really at all.  She was stared at plenty, but although I noticed it, I was able to pretty much ignore it.  Or else I thought "Yeah, here's one of those kids with autism you hear so much about in the press, live and in person!  Feast your eyes!"  It was a bit of an in your face attitude I felt, and believe me, that is not an attitude that comes easily to me.  But as Janey gets bigger, she stands out more and more, and unless we keep her out of sight at all times, she's going to be stared at.  And...so be it. Especially in the Target, there were plenty of odd people that I think warranted more staring than Janey, but that's life.

I also noticed during the trip that we are better able than we used to be to set aside tough moments and remember times as positive.  There were certainly screaming moments on the trip, times that Janey for no reason we could see just lost it and screamed and bit her arm, times that she was quite unhappy.  But we know now that usually, unless something big is going on, these times pass if she's in a generally good mood.  She said one of her longest sentences in a while when looking in the mirror---"I have one blue eye and one big eye"  She actually has two blue eyes that look the same size to me, but it was a cool moment to hear her thoughts while looking at herself.  She also did a lot of singing and dancing---always fun to watch.

As the years go by, I think we are learning to meet Janey in the middle.  For someone with typical kids only, this trip might have seemed like not much fun.  We did little outside the hotel rooms or the car.  We drove around a lot, as Janey loves that.  We did get out to dinner, just Tony and me, on Saturday night---thanks, big brother Fred!  We dealt with a few meltdowns, but we also laughed a lot.  Our lives with Janey are never going to be mainstream.  She's going to be stared at, she's going to scream at times, we aren't going to be able to do typical getaway things.  But we will also have the fun of watching her joy at little things, and the freedom, in a way, that comes from having a preteen that still gets a thrill out of being with her parents doing not much. We'll keep on going, and take our fun where we can get it.

When people can't see the delight

Janey had a physical today.  I like my pediatrician a lot.  He has been very good to my family over the years.  He saw each child on the very day they were born, and it was exciting today to have him see William as an adult, ready to go to college---great to have him see how far William has come, and to have him see the fine young man Freddy is too.  But something bothered me a little about the visit.  I couldn't quite put my finger on it at first, but I think I have it now.  I don't think he can see the part of Janey that is a delight.

To be fair, Janey generally screams all through doctor's visits.  She is very healthy, so he rarely sees her except once a year, and at the time, we are usually seeking advice on serious matters, thinking about her future, worrying about things like her biting herself or if she will ever be toilet trained fully or what puberty will be like.  He doesn't often get to see Janey happy.  But today, although Janey did scream a fair amount, she also cheered up at one point and smiled at him so sweetly, and then suddenly went over to him and said his name "Dr. ------!"  Tony and I were excited.  And he was kind to her, but he didn't seem charmed.  When I talked to him alone, once Janey was out of the room, he was very serious, and talked about how we should start thinking about quality of life, and taking note of how it is every six months or so, and deciding if it's getting better or worse---what the trends are.  I know he worries about us.  He said as much, and I think I saw tears in his eyes.  He's a very kind person, and he cares for us.  And on paper, and from her brief visits, I can see there isn't a lot to delight in with Janey.  She is probably one of the most disabled patients he has.  She is also probably behaviorily one of the most difficult.  There have not been that many moments of triumph with her.  She hasn't made exciting huge jumps.  She is not a classic success story.

But she is so often, in so many ways, a delight.  And many people do see that.  Her teachers, her aides, the staff at the school, her brothers at times, Tony and myself often---most people who spend any amount of time with Janey have seen what a delight she can sometimes be.  Not always, not even mostly, but often.  She can make us happier than almost anyone when she is happy.  She is funny, she is spontaneous, she is often a blast in her own way.  She can make us despair, sure.  Often she does.  But sometimes she makes us laugh until we cry too.  After the appointment today, we went to get some food.  Tony took her to Burger King, and I went with the boys to a burrito place.  She came over with Tony afterward, and saw a big bunch of high chairs, and said "I want the high end chair!"  We laughed and said "You are too big for the high chair" and she said, for about 20 minutes "You're too big for the high end chair!", like she was discussing finer furniture.  She knew we found her funny, and she was playing it for laughs.  Both the boys were in, well, teenage moods, and it was one of those times that we appreciated what Janey is most.

I think there are some people that, although they might care very much for Janey, that they may want the best for her, can't completely get past the part of her life that is a tragedy.  And it partly is.  She has made our lives often very, very, very tough.  She is not happy much of the time.  She will almost certainly never live on her own, never hold a job, never be able to be unsupervised.  She is functionally severely intellectually disabled---although her mind might hold much knowledge, there isn't a way to access that knowledge usefully.  But she is also a little girl, a beautiful, funny, sweet little character that we love extremely much, and I want others to see that.  I know not every can, or will.  To be honest, I don't know if I would have been able to, if she were the child of a friend and not my own.  But I've learned that a child like Janey is not a tragedy.  She is a person, a child, my child I love.

Here's a picture I took while in the city for the appointment today---Janey at the side of the Hancock Building, delighting in seeing the other Janey, delighting in seeing herself.  The smile in the picture says what I want to say more than my words do.

Total Janey Time

Starting this week for a while, Tony has arranged his schedule at work so he can do the afternoon pick-up of Janey.  That is so wonderful it's hard to describe.  The drive back and forth to school has become increasing tough over the years.  I'm into my 14th year making that commute, through busy parts of Boston, with crazy Boston drivers, and lately, more often, a passenger that is disruptive, my Janey.  I feel myself re-energized just knowing I don't have to do that drive twice in a day.

I've decided, when Janey does get home, it's going to be Total Janey Time.  I've always thought one of the most important parts of the day as a parent is when kids first get home from school.  It's one of the reasons I haven't worked outside the home.  Kids need to reconnect after school, even older kids.  They need someone to listen to their stories, someone to take their complaints, someone to feed them.  I've loved being able to be that someone for the boys, and I've realize that has been missing with Janey, mostly because by the time I get home with her, I'm done for.  I often pass her off to Tony and rest a little, and she often gets crazy.  So as a trade-off, now she's going to get my best when she gets home.

What is Total Janey Time?  It's doing things with her that she loves, without trying one bit to make it a teaching time, a molding social skills time, a time for anything but fun and comfort.  It's what I've realized Janey is requesting when she constantly requests to "snuggle on Mama's bed"  And it's what I often don't do.  I seize on time with her to try to either teach her something or work with her on behaviors, or just try to do something with her that's MY thing, not hers, like reading a book or coloring.  Total Janey Time means snuggling her, playing the little games she loves with her, singing to her and just letting her be her.  We play Creep Mouse, we put our faces close together until it looks like we only have one eye, and I say "you only have one eye!" and she laughs, I sing clips of songs I know she loves, like "I went to the animal fair" or "John Jacob Jingleheimerschmit"  I don't try new songs or new games.  I clap her feet together and sing "chicks and ducks and geese better scurry", which I did once when she was about 3 and which she instantly loved for some reason.  We say our little routine "Let's talk about how much I love you!  I love you a..." and she says "million"  I say "I love you more than..." and she says "chickens!"  It makes no sense, but it makes her happy.  It's bonding, it's fun.  It's also about like you'd play with a toddler, and that is why I sometimes resist it.  It seems like it moves nothing forward.  But why shouldn't she have a time each day that's for HER?  She lives in a world she often doesn't understand, a world that I am sure is startling and stressful for her so often.  We all have things we do to center ourselves, to get back to feeling relaxed, and Janey needs that too.

After the first few days of this routine, Janey came in the door, and raced as fast as she could to "Mama's bed", a huge smile on her face, waiting to start the routine.  That was wonderful.  It's a huge reminder that we all need a time and place to feel completely accepted as we are.  It is what I think often gets left out of the day of a child with special needs.  We all want to help them learn, to help them understand and relate to the world around them, but that's a lot of work for them.  They need as much as any of us do to just have downtime.  I'm going to try hard to give that to Janey more consistently.

A Day at the Beach

We went to the beach yesterday, and had a great day, overall. It's wonderful when we can enjoy ourselves while Janey is too.

I worked a lot on something they have been doing with Janey at school too---teaching her to come back when called. I let her run a bit on the beach, not far, but a little ways, because of the nice long visibility. Then I would yell out "Come back, Janey!" and nine times out of ten, she did! I gave her a high five when she came back, and said something like "See? If you come back nicely, you can run around more!" She seemed to get it. However, the one time out of 10 she doesn't come back is the killer, and in most places, there's a lot less visibility and a lot more things she can get into than at the beach. But it's a start.

Janey loves the water and the sand. She is fearless with waves---they wash right over her head and she just laughs. When we wanted to sit on the beach blanket for a while, she just sat sifting sand in her hands, mostly.

The ride to the beach on the subway was a little tougher. Janey hasn't been on the subway much, and the noises bothered her. It was interesting and a little sad watching how hard she tried to keep it together, but after a few stops, she couldn't. I talked to her about the noises, how they were normal and just the train moving, and she did calm down some after a while, but with some loud crying and screaming first.

When we got to the beach stop, she got upset again, and actually told me why! She kept saying "This is NOT Ve-vere Beach!" "I want to go to the beach!" The other times in the last few years we have taken her, it's been by car, and climbing stairs out of a subway didn't make it seem like we were going to the right place. I reassured her we would see the beach very soon, and when we did, she was fine.

My friend Maryellen and her daughter went with the boys and me for the trip, and that was perfect, as there was a variety of eyes to be on Janey if mine weren't for a minute, but no-one had full charge of Janey every single minute. If someone does, it's impossible for them to have fun and relax, but if I have primary charge but know I can get a break when I need one, it's great. I can enjoy the time with Janey, playing in the waves, digging in the sand and just watching her enjoy herself.

I guess my conclusion here is that it IS possible to have enjoyable days out with Janey. They have to be doing something she likes, there needs to be a big ratio of potential caregivers to Janey, you have to be prepared for meltdowns now and then, but although that sounds like a lot, it didn't feel like it. It felt like a nice, relaxing day, something I need to figure out a way to have more of.

Follow-up

I was thinking about my post today while playing with Janey tonight. We were playing with her Ni-Hao Kailin doll---silly games like having the doll sneak up on her, the doll dance on her, etc. She was very, very happy. Then I had an inspiration---have the doll "talk" to her and ask her questions. I had the doll ask "How old are you?"---something she will occasionally answer. But not tonight. So I tried being persistent, pretending the doll didn't want to play unless she said how old she was. And I saw something I've seen so many other times---the light go out of Janey's eyes. We had been connecting, having fun, and in trying to teach, I put pressure on her. She stopped playing at all, got her faraway "autistic" look, and then asked for a video. Whey do I do that? I guess it's because I still in some way hope that she will not be retarded. I hear about how important the early years are, and I feel like I'm missing some vital chances. I need to listen to my own words---if we are having fun, connecting, that's the kind of learning she needs from me. I need to keep her out of the closed-down zone as much as I can. That is more important than reviewing facts with her. But I can talk a good talk, but not always walk a good walk.