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Showing posts with label Daddy. Show all posts
Showing posts with label Daddy. Show all posts

Tuesday, April 21, 2020

Daddy's thank you to Janey during trying times

Janey, I want to thank you for being such a very good girl during this Corona Virus time! I also want to thank you for making me so happy after you got better from being very sick from your appendix that burst about five years ago.
Too many times daddy feels angry or sad about things. But you help me forget my angry and sad feelings. You are always jumping up and down, smiling, laughing, singing and playing YouTube kids on your iPad. You helped me learn some of your favorite nursery rhyme songs because I watch a lot of CocoMelon, Chu Chu TV, Mother Goose Club, and Dave and Eva with you on the Internet. I even learned to play the harmonica for some of your favorite nursery rhyme songs! Your whole face smiles when you hear me play songs like Ten in the Bed, Looby Loo, Skip to My Lou, Five Green and Speckled Frogs, and a few more songs.
Thank you Janey for asking me everyday to give you car rides with music because you still want me to play British Invasion 1960s music on YouTube. You helped me find some super amazing songs and videos like "See See Rider" by the Animals, "Tobacco Road" by the Nashville Teens, "I Feel Free" by Cream, "Baby Please Don't Go" by Them, "Someday We're Gonna Love Again" by the Searchers, Fleetwood Mac's "Oh Well," "Have I the Right" by the HoneyCombs, "I Can See for Miles" by the Who, "Shapes of Things" by the Yardbirds, "Sunny Afternoon" by the Kinks and "Long Tall Woman in a Black Dress" by the Hollies!
And Janey, you have me watch a lot of your favorite movies on Disney +! I have a lot of fun watching these movies as you ask me to play "Miguel the Guitar Boy," which is really called Coco, "Bad Llama," which is The Emperor's New Groove, and all your "Buzz Lightyear" movies, which you sometimes call by their real names, like Toy Story 3.
Janey, you make mamma and me laugh so loud when you sing to yourself or repeat some lines from your favorites movies. I often hear you sing "a cold cup of coffee and a piece of cake" which comes from a song named "Matthew and Son." Sometimes you say "put me down you idiot," and I laugh because that was when Big Baby from Toy Story 3 picked up evil Lotso and threw him into the trash!
Oh Janey, please never stop being yourself as you are just too funny! You smile and laugh for your brothers William and Freddy when they play with you! Mamma and daddy love it when you smile so much for your teacher when she uses her computer with Zoom to see you! We love it when you hug us over and over because you're so happy and enjoying life!
Thank you Janey for making me a better daddy and a happier person!
You are the best Janey!

Saturday, October 24, 2015

In The Driver's Seat (Guest post by Janey's daddy!)

For the first time ever, my husband Tony wrote a guest post!  It's written as a letter to Janey, to show appreciation of the changes that have allowed us to travel a bit more lately.

Thank you, Janey!

For the past four months, Janey, you have allowed me to be in the driver's seat of Daddy's car. Almost every day, I take you on at least one car ride, because you want me to play music for you in my car's disc player. This is something you have wanted me to do since you came home from the hospital, after you were very, very sick from your appendix bursting.

You like these car rides with our music that I play for you so much that you seem to also enjoy your bus rides to school in the morning and the afternoon bus rides when you come home from school.  A lot of times you run happily onto the bus in the morning, and Mama tells me that you run off the bus all happy in the afternoon and bolt right into the house.

Daddy's car rides with our music seem to make you so happy, even after you have been very angry or sad, that your brother William said to me, after he came along with us once, "wow, it's like giving Janey medicine." 

Most times our drives together are about an hour long, but sometimes, you and Daddy like the music so much that we drive for two or three or more hours. You hear some songs, like Santana's "Soul Sacrifice" from Woodstock in 1969, or The Ventures' "Wipe Out" from Tokyo in 1966, and you soon look like a humming bird as you drum your arms so fast out of happiness that they become a blur!  Sometimes Daddy and Mama think that our old car is breaking but it's really just you dancing and rocking so fast in the back seat!

And when we drove far away to take Freddy to his new school in New York, and to Maine to see Nana, Grandpa, and Aunt Sarah, you were so nice and happy in the car with our music playing, even when we were stuck for a long time in silly Massachusetts' traffic! And you were so good and happy in the hotel houses we stayed in.

And Janey, you put a big smile on Daddy's face whenever you come up to me now and say the first words of a song you want to hear on the next car ride, like, "You want to hear "generals gathered in their masses"?" That song is called "War Pigs" by Black Sabbath, which you like because your brother William has played it on his guitar and sang for many years in his room.

Mama has made you many music discs and put songs on your iPod since you were a little girl that we now play in the car, like "Angels We Have Heard on High" and Johnny Cash's funny song "In the Jailhouse now." And Janey, when you want to hear "Folsom Prison Blues" and you make your voice sound lower and say "hi, I'm Johnny Cash," you do that so well! We play songs "Beat It" and "Bad" from the disc Freddy gave to you for Christmas.  And you laugh a lot when daddy plays Weird Al's "Eat It" and "Fat." Daddy laughed so loudly when you said to me "you ain't fat, you ain't nothing!"

Janey, I hope we don't get too much snow this winter, because I still like to drive you around!

Again, thank you, Janey!

Wednesday, September 23, 2015

If I could ask you, Janey...

What if somehow, I could ask Janey all the things I wonder about her, and she could answer me, answer me clearly and fully?  I have a store of questions a hundred pages long.  Here's a few of them.

Do you like school?   I hear from your teachers if you had a good or bad day, what activities you had, some of what you learn.  But no-one but you can really tell me if you are happy at school, or tell me how you feel about the types of things your brothers told me---what kid in the class annoys you, what lunch is like and who you sat with, a funny thing that happened in class, a moment you felt scared there about something.  I don't have any idea what school really feels like for you.

What makes you like certain movies and TV shows so much?  I certainly know what you like to watch, but I often wonder---why those particular videos or shows?  Why do you watch "The Goofy Movie", with the story of father son bonding and a road trip, over and over?  Why is your favorite Disney movie "Hercules", a movie most people think is one of their weakest offerings?  What is it about that certain episode of Little Bear where Uncle Rusty babysits that makes you want to see it over and over, and makes you scream if I try to put on a new episode?  I would love so much to know what you like about the shows that you like.

When your appendix burst, how did it feel?  How could we have not known how much pain you must have been in?  That one haunts me.  We think Janey's appendix had been ruptured for three days before it was removed.  The pain must have been incredible.  We knew she was sick, enough that we took her twice to the emergency room, but neither us nor the medical professionals at one of the best hospitals in the world knew how serious it was, not until a CAT scan was done.  How could that be?  Do you feel pain differently?  Did you think we did know somehow and just weren't doing anything?

Do you understand at all why people come and go?  You miss Daddy so much every day while he is at work.  Do you have any notion what "work" is, why he has to sometimes leave for the day?  We say your brothers are at college, and you have seen their rooms, but do you get at all why part of the year, they go to live someplace else?  You ask for Auntie Carrie, for Nana and Grandpa, for Auntie Rose.  Do you get that they have their own houses, some of them very far from us?

Why do you scream?  I know there might be all kinds of answers to that one, but what most upsets you?  Why can you be happily watching a movie and suddenly, you scream, like you are in horrible pain?  Are you?  Is it when you don't understand something?  How can we help?

Why do you say "duck" between thoughts?  This is one I wonder about a great deal, although it's not as big an issue as some of the others.  You use the word "duck" like a divider, like a period or a dash, or a repeat sign.  You'll say something like "I know what you mean, but it's just not funny!  DUCK.  I know what you mean, but it's just not funny!  DUCK  You stole my pencil!  DUCK  I can write your name better than you can!"  All quotes from one of your favorite episodes of The Simpsons, but why the Duck in-between parts?  What does it mean?  How did it get started?

What could I do to make your life happier?  That is what I want to know the most, Janey.  I wish you could tell me all the little things and big things that would make you happy.  What could I get for you?  Where do you want to go?  What are your dreams?  Do you have dreams?  I guess at these things; I try as hard as I can to make your life as meaningful as I can.  But the truth is, there is so much about you I just don't know.  I love you so intensely, Janey, but I often feel like I have failed you.  Without the ability to communicate verbally at more than a basic level, without another form of communication, I am so often left guessing.  I can read about people with autism that have learned to communicate, and I can get some ideas, but they are not you, Janey.  You are, like every person with autism, like every person in the world,  a unique, fascinating, complex person, and in so many ways, Janey, I don't know you.

Tuesday, August 11, 2015

Summertime, and the living is...not so hard

Yes, I wouldn't call the living easy, but it's closer to easy than it usually is with Janey.  Here's an account of a typical day this summer with Janey....

8 am ...  Wake up.  Janey has shown that left to make her our schedule, as I pretty much do with my kids in the summer, she is a night owl.  She's been staying up late and wanting to wake up late.  Actually, thinking about it, 8 am is not that late, but in our family of mainly larks, it is.  

8-9 am  Get ready for summer school.  I tell Janey it's a school day as soon as she wakes up, along with any other vital information about the day.  The problem with that is that she's always ready to move on to the next part of the day, so if it's a school day, she wants to be out waiting for the bus.  I delay her as long as possible, but we always wind up waiting for the bus long before it actually comes at 9.  Some days, there's screaming and arm biting as she gets tired of waiting but it's too late to go back in, but most days, it's been okay.  I sing some special bus waiting songs, mostly songs from Oklahoma, which for some reason I've sung each summer as we waited for the summer school bus.  I comment on each car or truck or bus that goes by, using my excited voice, which tends to keep Janey happy.  And then the bus arrives, and she hops on quite readily, to head off to the black hole of summer school.

9-3  I call it the black hole of summer school as I have little idea what she does there.  Her teacher does write now and then, and I know there's ABA and going in the sprinklers and breakfast and lunch, but of course Janey tells me nothing about her day, not a word.  That is a tough part of having a minimally verbal child.  Her life when not with me is a blank to me.  However, she seems happy!  I do dishes and laundry, and garden and play Scrabble on Facebook and try to make myself clean, and usually sneak in a nap.

3-4  The Waiting For Daddy Hour   Tony goes into work very early in the summer, so he can get home around 4.  Janey knows EXACTLY when he should be home.  I don't know if she can tell time somehow, or is just a very good judge of how long time chunks are.  But every day, about 3:45, she asks to "go see Daddy", which means walk down the street to meet Daddy coming home from the train.  If Daddy is late, or takes the train that comes in a different place, it's not very pretty.

4-6   This is Janey's favorite time of the day.  It's when Daddy does one of three things with her, sometimes all three.  He takes her for a ride in the car, a ride to nowhere, just cruising around and listening to mix CDs he has made for her.  She's become a huge fan of The Animals and The Monkees, and it's mostly those they listen to, with a few other songs thrown in---some Black Sabbath, some Beach Boys.  If they aren't riding in the car, they are cooking together.  Janey's favorite is "soup", which means kale or collard greens fried in oil and topped with hot sauce.  The third activity is a fire in a little fire pit Tony got.  We of course watch her extremely closely during this activity, but she adores looking at the fire.

6-9 (or whenever) This is video or TV time, combined with YouTube and iPad time, with occasional snack time or brother time thrown in.  Janey is in love especially with one movie this summer "The Little Mermaid 2:  Return to the Sea"  I am not sure what the appeal of it is, but we know it by heart.  There's also a lot of Word World and some Little Bear thrown in.

9 TV unplugged time, bed time.  We have to unplug the TV, as when Janey gets tired, she gets dissatisfied with shows after about a minute.  Most of the shows she likes are on Amazon Prime, which we have to use a password for, as otherwise, Janey can and has bought shows that aren't included in our membership.  So we are called upon to enter the password every time she gets tired fo a show, even if she just wants to watch a different episode of the same show.  We do let Janey have the iPad in bed.  It doesn't keep her awake, as once she's ready to sleep, she sleeps, instantly.  There is no drowsy period with her---she's wide awake or fast asleep.  Some nights, she's up until 10 or 11, but I'd say 9:30 is a good average.
So....we are hanging in there.  I left out a lot of times that there is screaming or arm biting, not just to make the days look better, but because these episodes are far shorter than usual lately.  We can edit them out of our days because I'd say the longest they have lasted all summer is half an hour in a row, which in the scheme of things, is very short.

I think we've been catering to Janey, to how she likes things, more than other summers.  I am sure this has to do with her time in the hospital.  We needed to keep her fed and keep her calm there, and once she first came home, at all costs.  It was a life or death matter, and I am not overstating things to say that.  And I think we realized, after doing that for a while, that we were all happier if Janey was happier.  We don't bother as much to say no to the little stuff.  If Janey needs a ride, if Janey wants to wait for the bus early, if Janey desires 5 viewings in a row of Little Mermaid 2, who cares?  If we are creating a monster...well, we aren't.  We are creating a happy girl, and one who because she is happy is making us happy.  We've done more family drives and had more of those spontaneous little good times than in years this summer.  I'm going to write more about some thoughts about what I'd call a new approach to life with Janey, but for now, I'm going to go meet her bus, cut up cheese into thin slices while she watches, the only way she likes cheese, put on a show and then change it if she needs it, and walk to meet Daddy.  And I'm glad to do it.

Thursday, May 7, 2015

The Car Wash Movie Theater

A few lots down from our house, there is a gas station with a car wash.  The car was is kind of a high tech one, and when it washes cars at night, lights flash.  We can't really see it unless we are in the back yard, and I'd never thought much about it, or considered that Janey had thought about it at all.

However, a few nights ago, we were in the back yard in the evening, and Janey suddenly said "Want to go to that movie?"  We were confused, and thought maybe she meant she wanted to watch a video inside.  But she persisted "Want to go to that movie right there over there?"  She isn't much for pointing, but she was looking in the direction of the car wash.  We asked "Do you mean where those lights are over there?" and she said "Yes!  Want to go to the movie over there?"

The result of a search for an image combining "Car Wash" with "movie"!
We were quite surprised.  I had no idea Janey would have any idea what a drive-in movie would look like.  She's only been to a regular movie theater once, and it looked nothing at all like the car wash.  But the car wash DID look a great deal like a drive-in movie would look at night, viewed from a little way away.  It blew my mind.  Once again, Janey had shown us that she understands and knows about far more than we realize.

I wonder how long Janey had thought that there was a movie showing right down the street from us, one that for some reason we had never seen fit to take her to or mention.  It made me think, as I do more and more, about how confusing and overwhelming it must be to be Janey.  There are so many things she understands more than we realize, but so much she doesn't understand, and the combination probably makes the world feel like an arbitrary and unpredictable place.

Janey's brother William came home from college two days ago.  Janey was asleep when he got home, and she went to school before he was up the next morning, so the first time she saw him was when she got home from school.  She was overcome with emotion.  She hugged him over and over, back away, just looked at him, and then hugged him again.  It was like seeing someone greet a soldier home from war.  I thought about how little I think she understands that he is at college---how she probably has no real idea what college even is.  In her eyes, people disappear at times, for days or for months, to go to places that have names but that she can't picture at all---"college", "work", "high school".  They must seem to come and leave at random times.  I think it's why she gets so upset if Tony is home even a little late from work, or sometimes if it's home early.  She has figured out his schedule, and that feels like something to grasp in the uncertainly.

As I slowly try to understand Janey's perception of the world, there are still always mysteries I can't figure out.  After Janey hugged William, she kept saying "There is my mother!  There is my mother!"  I was near them, but I don't think she was just saying that.  Somehow, she was trying to tell William something about me.  Maybe she was realizing that I am William's mother too, or saying that William and I look alike, which we do to some extent.  Maybe she wanted to make sure I was joining in the excitement, or commenting on how we were all together again.  I don't know.  I wish I did.

I think if I could better understand how Janey sees the world, I could better help her deal with it.  I could try to find a way to explain to her where people go when they aren't here.  I could take her to the car wash and show her it's not a movie.  I could talk to her about whatever she was trying to say about William and me.  I would hope she'd be happier in a world she better understood, but it's a huge challenge to find ways to figure out what she is thinking, what she grasps and doesn't grasp.  She is a career, a life's work, a joy and a puzzle.

Wednesday, December 31, 2014

Another New Year's Eve, and a look back

I decided to look at my last post of each year since I started this blog, when Janey was 3.  It was an interesting exercise.  A couple things struck me.  One is that I kept, each year, desperately looking for progress, finding signs of it, listing them and then, the next year, without realizing, listing the same things again.  The progress ebbs and flows, but it doesn't seem to really be a forward line.  Another thing is that the end of the year has been a quite tough time a few of the years.

2008 Last Post of the Year Link

In 2007, I'd just started the blog, and didn't really write any year end post.  At that point, this blog was more of a diary. 2008 was a lot the same.  Strangely, what I wrote for the last post there sounds like it could have been written about the past few months---hitting the TV, biting, scratching.  Janey was only 4 then, and so the behavior was easier to handle, but it's a little startling to see it started then, with quite a few years in between that she has less acting out.

2009 Last Post of the Year Link

Janey's love of Christmas music hit that year, and it's fun to read about that.  I was starting to realize how severe Janey's intellectual disability was, and how her talking was very limited.

2010 Last Post of the Year Link

Janey was 6 that year.  It was a tough year, the year she had such a terrible time around June, and we started her on medication.  I reflected about the lack, once again, of a miracle breakthrough, and was starting to see it wasn't ever coming.

2011 Last Post of the Year Link

I was a little more upbeat that year, the year Janey was 7.  I remember that as one of the better years.  I went back to the theme of how limited the progress was, but I also wrote about cute things she was doing.  We were learning to enjoy our little girl as she was, not for what we were hoping she would become.

2012 Last Post of the Year Link

Another fairly good year, when Janey was 8.  I reflected on realizing that I was the one who knew her best, and I was encouraged by her increased understanding of our talking, and her communication, although talking wasn't how most of it was done.  I mentioned toilet training, surely thinking we were finally on our way (we aren't, and I now think we never will be)

2013 Last Post of the Year Link

A very downbeat post.  The end of last year was awful---the whole year was the start of the new reality, that Janey was getting older and things were getting tougher.  She was becoming increasingly unhappy, and I was feeling increasingly pessimistic.

And that brings us to now, 2014.  It's been quite a year, as most of you know.  The two big events were Janey changing schools and her hospitalization.  She switched this year from the inclusion classroom and school she'd been in since 3 to an autism only classroom in an autism wing of another school.  Much of that went fairly well, and in fact the time from about May-October was overall good, with Janey having a pretty nice summer and even going to the amazing Camp Fatima overnight.  However, we will most remember November this year, when Janey's self-injurious and lashing out behaviors increased to the point that she spent 24 days in two hospitals.

Where are we right now?  Right now, today, Janey is in a fairly good mood.  We are thinking her new medications might be doing something, although we've had kind of an off and on pattern of good days and not as good days.  Janey is Janey.  I think less, these days, of progress, and more of just learning how to best be a mother to the Janey I have.  She is an amazing person in so many ways.  We continue to enjoy her love of music.  Just today, we listened as she heard three new songs (we've been listening to a classic rock countdown) and sang them back, all perfectly, within minutes  She and Tony have a special morning routine any day he's not working---bacon and pan-fried vegetables all morning.  She uses the computer with ease to watch videos she likes.  She is getting tall and remaining beautiful.  Yet we are on alert all the time.  We knew at any minute, she might rage and bite us or scratch us.  We know that good days are to be treasured because there will be bad days, and they might be very bad days.  We love our Janey.  We despair over her, often, but we delight in her often too.

Here's a year end picture of my girl, and my year end wish to all of you.  Might you all have a 2015 where the happy moments outnumber the sad, and may you all have moments of true, pure joy in your special children, the moments that keep us all going.  My love to all of you.


Wednesday, June 25, 2014

Three days of summer down

I don't like summer.  I've never liked summer, although growing up in Maine, I couldn't totally hate it, as a Maine summer is the most glorious thing there is.  But a Boston summer?  You don't often hear that praised, and for good reason.  Summer here tends to be muggy, almost every day.  Boston feels like a place you get away from in the summer, if you can.  But with Janey, we usually can't.  Summer feels endless to me, every year.  I feel like I just survive until September.

I try every year to have a better attitude about summer.  When it's not actually summer yet, I plan in my mind how this year is going to be different.  I will take Janey some great outdoor places, early in the day before it gets too hot.  I'll take her great indoor places in the afternoon.  I will think of activities she might like at home.  I will try to do workbooks with her.  We will play with water a lot.  I will spend long days just being with her, doing whatever makes her happy.

Well, it worked for Monday, the first day of what I see as summer---a day without school where Tony is at work.  Monday was a great day.  Janey was cheerful all day.  We were outside a lot, playing with a bucket of water toys.  When we were inside, I did as she wanted me to do---we did a lot of snuggling, she watched a reasonable amount of videos, and we actually read about 10 books.  That is new, that Janey will have enough interest in books to sit and listen to them, and often want them read again.  We went to the drug store, and Janey actually asked me before we left for a shovel "Want shovel?" and then when I asked her to repeat it, thinking I might be confused, she said "Want to shovel some things?" and made a shoveling motion.  Of course I got her a pail and shovel beach set.  Later in the day my friend Maryellen came over, and her daughter Julia.  Janey said "Julia" for the first time in many, many years, and talked a lot to both of them, and was just a delight.  I kept thinking that night that maybe we had turned a corner.  Maybe things would be easier from now on.

Then Tuesday.  A day from hell.  Janey woke up cranky, and then I had to drag her with me to take William to work, which she objected to by screaming the whole way there and back.  And she pretty much screamed the rest of the day.  I tried all the same things that had worked so well on Monday, but Tuesday was no Monday.  By about 2:30 I was feeling completely overwhelmed.  I actually asked Tony to come home a little early, something I haven't done in a long, long time, because I was at the end of my rope.  Freddy was holding a party for 20 of his most intimate friends on our 3rd floor, so I couldn't leave the house with Janey, even if I would have thought of attempting that with her in that state.  Of course, when Tony got home, a little early, Janey was having a rare calm moment in the back yard, and she was much better all night with him home.

It's possible that Janey realized on Tuesday---"Hey, this is the second day with no school and no Daddy.  This could be the start of a whole stretch of days like that.  I am not going to like this"  So this morning, I did my monologue talk to her about summer.  I explained that summer is when Janey doesn't have school (I didn't get into summer school just then) but Daddy still has to go to work (and I didn't get into the two separate weeks he is taking off), but that he still comes home at night.  I told her William and Freddy are sometimes at work in the summer and sometimes home, but that Mama is home with Janey always (to which I bet she was thinking "wow, how did I ever get THAT lucky" in a sarcastic way).  We were snuggling on the bed as I talked, and at the end, I said "it's like right now.  Mama is right here..." and she jumped in "next to Janey!" which made me think she was listening.

I then tried to make today as much like a Daddy day as I could.  Tony spends a big amount of the day cooking with Janey.  It's something they both enjoy.  So I went out while the boys watched Janey and got ingredients for two fairly complicated recipes, and I spent a lot of time in the kitchen, talking to Janey about what I was doing and having her "help" when she could.  The day was better than Tuesday but not as good as Monday.  There were certainly some screams, but overall, I didn't end the day feeling desperate.

I still think, in a small way, that things are turning, are getting better.  I have to believe that.  Janey's screaming moods don't last as long as they did, and she just seems more connected.  I loved the reading, and I loved her asking for the shovel.  I guess part of the problems is that I tend to be very influenced by the here and now with her, not the big picture.  It's hard to live in a big picture mode with a child that is so very in the moment.  When Janey screams, it's hard to think "well, at least it will probably not be for days".  But luckily, I guess, when she is precious and engaged and happy, it's hard to picture just how tough it can get.  Maybe that is a gift that being an autism parent brings after a while---short-sightedness.  It's like how mothers forget childbirth or the very early non-sleeping days with a baby.  You have to forget it, or you would never have a second child, to say nothing of a third or more.  I have to live in each day with Janey, because looking at all the days to come for the rest of my life (and the days she will live when I am gone) is too much, too overwhelming.

So here's hoping for a summer that is much more like Monday than Tuesday.  But I'd settle for Wednesday.

Thursday, February 27, 2014

A slice of the non-sleeping life

In the ever-cycling parade of moods that is Janey, we have come back to one of the toughest---Non-Sleeping-Girl.  It's only been two nights so far, and I'm hoping it is a short-lived mood, but it's rough.  And I have to give credit where credit is due---it's much tougher on Tony than me, because he is far better at staying awake and taking care of Janey in the night than I am.  Let's have a little slice of life from last night...

7pm---Janey goes to sleep, after having been up (and cheerful) since midnight.  Tony was up with her from midnight on Tuesday night into Wednesday.

3:30am---Janey wakes up, ready to party.  Superhero Daddy attempts to care for her, but is just too tired, and wakes up Slacker Mama.

4 am---Slacker Mama gets up with Janey.  Janey tempts her with saying "want to snuggle?"  Mama pictures a nice back to sleep time.

4:01 am---Janey is back up.  She wants ketchup.  She wants Kipper.  She wants cheese.  She wants Daddy.

4:02 am---Mama doesn't respond quickly enough.  Janey takes matters into her own hands and opens the door to the bedroom where Daddy has been trying to sneak in some sleep, and wakes him back up.

4:03 am---Mama tells Janey to leave Daddy alone, and goes to get Janey some ketchup.  Mama takes a millisecond too long.  Janey screams as loudly as she can.  Mama tells Janey it's time for the screaming room.  Janey looks excited and rushes into the screaming room (aka---the bathroom).  Mama reflects that the once promising screaming room approach to Janey's screaming no longer works at all.

4:15 am---Janey says "All done screaming!" after some good times in the screaming room.  We leave.  Janey screams loudly.  We got back.

4:30 am---out of the screaming room.  Janey goes to wake up Daddy again.  Daddy's saint-like patience is at an end, and he asks Mama to PLEASE keep Janey from waking him up again.  Mama says she will try her hardest.

5 am---after trying her hardest for a solid half hour, Mama suggests to Janey that they "snuggle down", which has been known in rare occasions to lead to sleep.  Janey happily snuggles down, and Mama instantly goes to sleep.

5:02 am---Janey goes to wake up Daddy.  Daddy gives up and gets up.  Mama hears him and says she is sorry every way she can think of.  World's Best Daddy and Husband tells Mama to just sleep.  His voice has only the slightest hint of anything but calm.

5::03 am on---usually morning routine of Mama drifting in and out of sleep while Daddy makes Janey bacon and makes himself and Mama coffee, the blessed substance without which we would all be done for.  And another day begins in earnest.


Friday, October 5, 2012

Just Pictures!

It struck me I've never put any older pictures of Janey here, from "before", before her regression.  Here's a few, and some more recent ones.
All eye contact here!  And pretty darn cute, I must say!

Making great eye contact, and loving music already!

Above is William, Janey and Freddy, when she was two, I think.

This one and the one below show the autistic look she developed at around 3---not all the time, but often.


Janey loves her Daddy!

She was very excited to dress up for Halloween that year, when she was 6, but when we tried to trick-or-treat, it was a no-go!