Winter

When I was little, I used to feel upset when people would say February was their least favorite month, because my birthday was in February, and it somehow felt like a personal insult.  Well, I'm finally forced to admit I'm not too big on February myself.  I haven't written for a while.  I've been feeling blue, and winter feels long.

I am sure it's not politically correct to say so, that it's one of those things I'm not supposed to admit, but sometimes, the unchanging nature of life with Janey gets to me.  Her progress lately, if there is any, is very, very slow.  Sometimes it halts altogether, or moves backwards for a while.  With typically developing kids, the changes in their interests or hobbies or friends or activities can move at a pace so fast it's hard to keep up with.  With Janey, that isn't the case.  She watches the same videos, over and over and over, that she did five years ago.  She doesn't have friends.  She doesn't partake in any outside the home activities.  Every day feels a lot like the day before. And of course, much of that is on me.  I should somehow make her life more varied.  But I am not sure how.  It's not like there is a huge list of possible classes or lessons or clubs waiting for her to join, or friends calling to get together with her.  She goes to school and she comes home.

As people have said to me often, it's very possible Janey doesn't crave variety in her life the way others might.  She might be very content with things staying the same, and indeed I think that might be the case. But as this winter wears on, I'm feeling---I'm not sure.  Restless.  Worried.

In the background of all this is the tense feeling political news, the uneasy national mood.  It used to be that the internet provided much of what I needed to keep feeling connected to the outside world.  But lately, it's hard to get online without feeling bombarded with strident differing views of every topic.  I rethink every comment I might have---is this going to set someone off?  I think of myself as mainly apolitical.  What bothers me is not so much any actual players or issues in the political scene, but the tone of the whole debate.  It feels like a "gotcha" kind of game, like an argument that can only be won by being fierce, or angry, or hyper-alert.  And where does that leave someone like Janey?  Where is the caring for those not armed for such a battle?  I had a strange dream the other night, a dream we were somehow at war and Janey had been drafted to fight. I screamed out to whoever was in charge "What kind of world is it when you expect someone like Janey to be part of warfare?"  And that is it.  It feels like there is little place for those who are dependent on others, who can't get out and fight for their rights.

So...we keep on.  We do our best, all of us out there living this life, to give our kids the best life we can.  Janey will come home from school.  I'll ask her about her day, as I have so many hundreds of times.  She won't answer.  I'll try to get her to use the bathroom.  She won't.  I'll end up changing her clothes and her bedding.  She will ask for cheese, for chips, for salami.  I will have them or I won't, she will eat them or she will scream.  She will want a shower, and she will ask to get out of it when she really means she wants the water adjusted.  She will ask to watch Kipper, and then I'll put on the wrong episode and she'll scream.  She will ask for a car ride.  I'll tell her Daddy will be home soon and maybe they will take a ride. I will hug her and tell her I love her.  She will laugh and hug me back, and we will get through another day.  And that is how the years will go on.

Janey's Burst Appendix Story---Part 3

If I could make wishes come true, this part of the story would be featuring us getting ready to go home, Janey almost all better.  But I can't make wishes come true, so I'll have to tell the story as it is happening.

Yesterday morning, Janey's oxygen was still a big issue.  The plan was to get her up and walking around more, to try to get the fluid that had built up in her lungs down.  She had gained 13 pounds of water weight in 5 days, without eating literally anything at all.  So the swelling was pushing on her lungs, as a chest x-ray showed.  We tried a walk around the floor, followed by Janey sitting up in a chair.  She got very, very tired from this, and when she got in bed, she went into a sleep that was very hard to wake her from.  If the oxygen mask left her face even for a minute, her oxygen went down, sometimes as low as 77, which is very low indeed. 

One of the doctors on her surgical team came to see her, and it was decided it was time to take her to the the PICU, the Pediatric Intensive Care Unit.  It was too hard to wake her and her breathing was too compromised to stay in the regular unit.  So around 2 pm, we were moved to the PICU. 

To work on getting Janey's fluid down, she was given a diuretic drug.  This worked pretty well.  Her swelling went down quite a lot, and gradually, as the evening and night went on, she was requiring less oxygen and was breathing better.  By morning, she was on room air.  Her oxygen levels now are around 93 or so, without oxygen---not perfect, but okay.

I got to listen in on her rounds this morning, where her case was discussed.  At that point, people were feeling better about things, and it was decided that if she stayed stable, possibly she would be able to go back to the regular floor this afternoon. 

Janey hasn't eaten really anything since last Monday, 8 days.  She's had IV fluids, but no food and most of the time, not even any water in her mouth.  The doctors said today she could have water, and clear liquids.  We offered her a choice, and she decided on a juice box.  She drank literally one tiny sip of it and threw up.  An hour later, she threw up again, far more than she had drunk.

By chance, the surgeon that had done her surgery was walking in the door as Janey threw up.  That started a discussion.  Janey's fever has never gone totally down for more than a few hours.  Today, it is higher than yesterday.  So, since she has shown her gut is still not working at all, the surgeon, Dr. Kelleher, said she might have an abscess in her digestive trait, as she had warned us could happen. 

So---tomorrow she will have an ultrasound to see if there's an abscess.  If there is, she will have a drain put in to work on clearing it.  That will not be fun.

Either way, it's probable that tomorrow she will have a special IV put in to allow her to get nutrition in an IV.  I think this is called TPN.  Her water drinking privileges are over for now.  She will stay in the ICU for at least another night.

Those are the facts.  My feelings---well, I will hold off on getting  into a lot of those.  It's all too raw right now.  I'll just say that just after she came to the ICU yesterday, I went to get something to eat while Tony was with Janey.  Somehow, my mind was such that I went outside and got lost.  I walked around the huge hospital complex aimlessly, unsure how to find anything, and pretty much not caring.  It was raining hard and I was numb to that and everything else.  When I finally ran across the front entrance, pretty much by change, and found my way to the cafeteria, I felt like I had forgotten how to do the most basic things in life.  There were lines to get hot food, but it seemed far too complicated to do that.  I grabbed the first sandwich and soda that hit my hands, and sat down to eat them.  I was mostly done with the sandwich when I realized it had olives in it.  I hate olives with a passion.  Then I looked at my soda.  It was Sprite Zero.   I hate diet soda.  All this to say---I was completely, totally, absolutely out of my head overwhelmed.

I calmed down after that, and today I am feeling back like myself, in reality.  Not to say it feels like any reality I expected to happen.  I would not have been surprised at many things that could have happened with Janey, but this?  She has barely been sick a day in her life. 

I was thinking how it would feel in the pre-internet world to be here.  As scary as this all is, I don't feel alone.  When I was awake in the middle of the night last night and wrote a post on Facebook, people saw it and commented within minutes.  That's an example of the miracle of having friends all over the world, people I have never met in person but that I have met with my heart.  Thank you, friends.

When your child bites---Unhelpful Internet Autism Advice

I don't look to the internet for advice on autism much anymore.  I've realized that even within the umbrella of ASD (autism spectrum disorders), Janey has aspects of her personality that are a bit unusual, and that even if she didn't, that old saying about if you've met one kid with autism, you've met one kid with autism holds very true.  It's hard for anyone to give advice about any specific autistic child.  That doesn't, however, keep people from trying.

I was imagining if I had a fairly newly diagnosed child and a problem to solve, and if I sat down at the computer to look for help.  Let's say, for example, I wanted some advice on how to deal with my child biting me.  I did a search this morning looking to see what I could find.  I realized that the three major pieces of advice I kept finding over and over each made me sort of mad, in different ways, in what they assumed about my hypothetical child or about me as a parent.  Why, you ask?  Well, here they are, with my reactions.

"Figure out what prompts the biting"

There's all kinds of variants of this.  I am not saying you shouldn't of course try to figure out what prompts the biting, or in the words ABA therapy uses a lot, what the antecedent is.  I'm just saying that almost any parent in the world would have already done that automatically.  I don't think most of us would be thinking "I'll just view this biting incident in pure isolation.  I won't think a bit about what led up to it".  OF COURSE we have already tried to figure out the prompt.  Sometimes, it's very apparent.  You told your kid no to more cookies and they bit you?  You tried to dress you child and they chomped on your hand?  In those cases, knowing the cause does little good.  What do you do---just give them cookies any time they ask?  Explain to them why they can't have more cookies?  Give them carrots instead of cookies?  Maybe you have a child where those solutions would work, but if you do, you probably don't have an autistic child or a child that bites.

If the cause of the biting isn't readily apparent, and you have to search for it, chances are it's not really the cause.  Kids with autism, as a rule, aren't subtle.  They aren't biting in response to some obscure stimuli.  Often, the sad truth probably is that they are biting because they are upset over something that can't be changed at all, or they are biting for no reason that is external.  In either of these cases, figuring out the cause does nothing.

As parents, we are pretty clued into our kids, and this piece of advice has always bothered me because it assumes parents are clueless.  If the cause is something we can figure out and we are able to change, WE ALREADY HAVE.  If your child hates the sound of the vacuum, you vacuum when they aren't around.  You have already figured that out.  That is not what is causing the biting.

"Give the child something else to bite.  Use a sensory diet"

Oh, wow.  That never once would occur to me.  If my child has just bitten me, all I really need to do is give them a bite toy!  That will fix things!  Oh, there's this stuff called "chewelry" they can bite instead?  You've fixed it all for me!

This one insults the child with autism.  I don't think any child is biting a parent or anyone else because they have nothing else to bite.  There are many, many, many things around a room that can be bitten.  If it's YOU who the child chooses to bite, that's not because you are just handy.  A bite toy or chewelry MIGHT work if your child is chewing their sleeves, or pencils, or something like that, but if they are biting aggressively, it's not really about wanting to bite in gneeral.

Sensory diet.  How I hate that term.  Here's what is meant by that, if you don't know.  It's not that I don't think that parts of what the "diet" consists of aren't helpful things for a child with autism, or for any child or adult.  It's the term I hate.  It smacks of the kind of 5 dollar word used by smug professionals to justify their pay.  I'm being nasty there, and I hope I am not insulting anyone who has used that term.  But use it internally.  When you say it to a parent with autism, you are making them feel like you know some special secret way to help their child.

"React calmly to the biting"

Now here's where the "autism parent as superhero" myth comes in.  Imagine someone has just bitten your hand.  Hard.  Hard enough to leave marks, to maybe even break the skin.  Hard enough that you had to pry their mouth off you.  Hard enough to hurt very, very badly.  Would you react calmly?  Would you say in a calm, steady voice "No biting", without any exclamation point?

Maybe other people can react calmly to severe unexpected pain, but I can't.  When Janey bites me, I yell.  I yell because it hurts.  I yell because I can't help yelling if I am in terrible pain.  I yell because I am angry she bit me.  Yes, I'll admit that.  When Janey bites me, it makes me angry.  And I don't think it's wrong that she sees that.

If by "react calmly", the experts are saying not to hit your child or bite them back, by all means, they should say so.  You SHOULD NOT hit your child or bite them back.  But you already knew that, and didn't need to be told, I would guess.  But staying calm?  We are not superheroes.  No matter how many times you are bitten, if you are really bitten, you scream.  And I think it's probably a good thing for a child to see that biting hurts.  They have to live in the real world, and they will, their whole lives.  People are going to react to being bitten.  And you are a person.


So, after I've dissed all this advice, do I have any to offer in its place?  Not really.  And that is what I wish was admitted more often.  If your child is biting you, and you are a parent with enough sense to come in out of the rain, you have probably already done all you can do to understand, react to and if possible, prevent the biting.  The biting that still occurs is part of the autism.  It may come and go.  It might get better when things are better overall.  It might get worse at times.  But the truth is if your child sometimes bites, they are probably going to keep on sometimes biting.  Protect yourself.  If they are agitated, try not to get in a position where they can bite you.  If they do bite you, get away from them so they don't bite you again.  Put ice on it.  That helps.  And if you yell at them "NO BITING!  YOU HURT ME!"---well, it probably won't do any good, but it's an honest reaction and might not be a bad thing for them to hear.

Ten things I'm grateful for---an exercise in positive thinking!

I wrote a post earlier today, and then deleted it after a bit.  I've only done that once or twice, but in this case, I realized I was letting my own discouraged feelings creep too much into my writing.  I was writing about how I felt, not about Janey, and although I'm sure there's a time for that, I have always wanted this blog to be about Janey.

I've been impressed lately with grateful lists that people have put on Facebook.  I am going to try to challenge myself to write ten things I really, truly feel grateful for in my life, things that relate to Janey.  I guess, in a way, I'm again writing about me and not Janey, but hopefully in a way that will help me focus back in on her!  So here goes...

1.  I'm grateful Janey can talk as much as she can.  I know there are many, many parents of kids like Janey who would give almost anything to hear their child talk.  I try to never, ever take her talking for granted.

2.  I'm grateful for a husband who is amazingly supportive, a true partner in raising Janey, and her favorite person on earth.

3.  I'm grateful for my sons, who make me proud every day and who are wonderful brothers to Janey.

4.  I'm grateful for the Boston Public Schools, who do a fantastic job with Janey and other children with special needs.

5.  I'm grateful for Janey's physical health.  I don't think there's many 10 year old on the planet who have been sick less than her.

6.  I'm grateful for Janey's love of music.  It's something we can enjoy together, and something I hope is a lifetime source of happiness for her.

7.  I'm grateful for the internet, for the chance to connect with other parents around the world with children like Janey.

8.  I'm grateful for friends, both those I know in person and those I know on-line.

9.  I'm grateful for living in this day and age, where knowledge of autism is growing all the time.

10.  I'm grateful for Janey.  I'm grateful I have a daughter, a beautiful, interesting, fascinating and unique girl.  Here's a picture of her early on, the girl I thought I'd never have...

That wasn't even hard to do, and I feel better! There is something to this positive thinking bit...

Always open for advice

First, just a note that Janey slept much better last night.  She seems better today---not super happy, but very little crying or screaming.  Thank goodness.

I've been thinking a lot about advice lately.  I've noticed that after things are very tough with Janey, and I write about it, a lot of friends and blog readers (and those categories overlap a good deal!) seem hesitant about offering advice.  I never want to make anyone feel that way.  People often say to me "I know I have no idea what it's like to being going through what you are going through".  Well, that's true, but that's true for anything anyone is going through.  None of us truly know what another person's life is like.  I know that everyone has tough challenges, and everyone has situations that are unique to them.  But that doesn't mean that no one has advice or ideas that might be helpful in another person's situation. 

For me personally, advice is never unwelcome.  I don't do anything in regards to Janey (or in any area of my life) I don't want to do, so if the advice is not something I think will work, I just don't use it, but that doesn't mean I'm upset I got it.  I need all the help I can get.  

I can see how it would be easy to drive people out of your life if you have a child with a significant disability. It's very easy, when sleep deprived and overwhelmed and at the end of your rope, to think everyone else's life is so much better than your own, and to start resenting them.  I never want to be like that.  Janey is tough.  I'll never pretend she isn't.  But I have a lot of wonderful things in my life.  She is one of them.  She is a wonder to me, so often.  And I have a great husband, two amazing sons and many friends so amazing I wonder every day what I did to deserve them.  I have enough to eat, shelter, all the books I could ever read (thank you, Boston Public Library), my hobbies, good health care, and I am living in this amazing information age, where from right at my computer, I can access Facebook, email and the whole world of the internet.  I am lucky in so many ways.

There are days when I feel very alone.  There are days when everyone feels very alone, I know.  But I know I'm not alone, and I am so glad I'm not.  So please, if you have ideas, advice, stories---never ever hesitate to share them.

Thankful

Today is Thanksgiving Day in the US, and I am indeed feeling thankful.  Here's some of the reasons why---

1.  I live in the right time in history.  In the past, Janey would not be able to go to school.  We would have been blamed for her autism, or we would have been told to put her away and forget her.  Or worse.  Nothing is perfect, but I think of all the historical eras I could be living in, I've hit the jackpot with today's world.

2.  I have a wonderful husband.  Tony, I couldn't do it without you.  Literally.  I think I'd be dead by now.  You are there when Janey wakes 10 times a night, when she screams for hours, when she cries for days.  You are there for the good times, too.  You make her bacon whether she eats it or not, just because she likes the process.  You sing with her, recite Three Stooges with her, delight in her good moods.  You are amazing.

3.  By twists of luck too improbable to seem like sheer chance, Janey is attending exactly the school I would have dreampt up for her, had I been dreaming up a school in my head.  The Henderson Inclusion School is something I am extremely, overwhelmingly thankful for.

4.  Janey has two amazing brothers, terrific young men who love their sister, who help me with her, who have fun with her and just treat her like a sister should be treated, with teasing and laughing and fun.

5.  I am so thankful for music, and for Janey's love of it.  The whole day is often filled with song, surprise tracks of pieces she's heard long ago and old favorites mixed together to make a medley I love to hear.

6.  Modern medicine.  I have all the questions and concerns and worries about it that most of you probably share, but when it comes down to it, I wouldn't be here to have those concerns without it.  I'd have died long ago from preeclampsia when pregnant with William.  Tony wouldn't be here without insulin.  Freddy would be here without the magnesium sulfate and skilled care that got him through a potentially deadly asthma attack as he turned eleven.  And Janey, without the medications I love to hate and hate to love, would not be able to be making the strides she is, I do believe.

7.  All of you, and the internet that allows us to connect.  Even twenty years ago, I would be alone in this all, maybe having met one or two other families ever with autistic girls.  Today, I can reach out and talk to many, many people about this tough journey, people that understand and have been there.  That's pretty darn amazing.

8.  And of course, I am thankful for Janey herself.  Janey, you are one terrific girl.  You are beautiful, fascinating, mysterious and so often, a joy.  You have brought me many challenges, but you yourself, you amazing girl, you make it all worth while.  I love you, Janey.

Ten iPad apps Janey likes

Notice here I didn't say "Ten iPad apps Janey has learned a lot from" or "Ten iPad apps I like".  Over the year we've had the iPad, I've realized if Janey doesn't like an app, it does no good.  It can be the greatest learning app on the face of the planet, but Janey's not going to use it at home unless she likes it.  She knows very well how to use the button to take her back to the menu of apps, and she never hesitates to use it freely if something doesn't interest her.  However, the few apps she likes get used a fairly lot.  Not a HUGE amount.  I wouldn't say the iPad is quite the success with Janey I'd dreamt it might be.  She likes it, but as a toy she turns to now and then.  I think she's learned a little from it, by chance, when an app that appeals to her just happens to have a learning component, but it hasn't been any huge breakthrough devise for her.  That being said, I'm glad I got it for her.  Any toy she actually uses and enjoys is a good toy, and the rest of us have fun with it when she's not using it.  Anyway, here's the list, with links when I can find them!  (in no particular order)

1.  PianoBall

This is a simple piano app.  You get a keyboard that kind of looks like a xylophone, which you can change the color and tone of with little balls above the keyboard.  It plays various simple songs, and has a mode where little stars sparkle above the key you need to play next.  Janey actually does this now and then, but mostly just fools around the colors and keys.  I thought keyboard type apps would be Janey's favorite part of the iPad, but that hasn't really proven the case.

2.  Fish School

Schools of fish form the letters of the alphabet and numbers.  You move to the next letter by swiping across the screen.  This was the first app Janey got into, and she still likes it a fair amount.  It's nice and simple and colorful.

3.  Christmas Song Machine

This app would most certainly not be on MY favorites list, but I would say it's Janey's all time favorite.  It features kind of animated scenes playing with a background of Christmas songs being sung fairly badly.  You pick the song by a somewhat complicated process in Santa's Workshop, which Janey mastered easily, as she does with most things that that she really likes.  If you are into hearing O Holy Night sung annoyingly and repeatedly in mid-July, this is your app.

4.  Elmo's Monster Maker

This is a cool app with a lot to it, but Janey doesn't use it the way it was intended.  You pick a blank monster, and then pick eyes, a nose and a hat for him or her, and the monster comes to life.  The choices change seasonally---there are Christmas ones, there were ones for the Olympics, etc.  However, Janey likes the monsters blank-faced, which you can do, and she then makes them dance to various types of music---disco, Mexican and so on.  She does this over and over and over.  I've often tried to interest her in the faces, but that is not the point for her.  You might have better luck!

5.  Starfall ABCs   

This app is like one that is on the internet, and Janey played it first there at school, and was delighted to find it at home.  You pick a letter block and the app shows a few things that start with that letter.  Some of the letters have little activities, too, like filling in the letters to spell "camp" and getting a camp song.  Janey knows the letters she likes and picks them out, but otherwise, I am not so sure she learns a lot from this.  She enjoys it a great deal, though.

6.  Firstwords Christmas

This one actually DOES teach.  I was thrilled when Janey got into it.  You get mixed up letters of a word, and have to put them in the right place, like a puzzle.  When you do, the app says the word and moves a picture around, and makes a sound.  Janey has played this for hours.  Over the year, I've seen her ability to match letters increase hugely, partly because of this app.  There are all kinds of other Firstwords apps, but Janey is a big fan of Christmas things and likes this one far better than the others.

7.  FindMe (autism)

This is the only app specifically designed for autistic kids that Janey has gotten into.  You find a little boy in an outdoor setting that gets increasing busy as you get better.  When you have found him five times, you get a dancing shapes reward.  Whoever designed this knew exactly what would motivate autistic kids, as Janey will play this for a VERY long time to get that reward, which to me looks very boring, but to her is the ultimate treat.  I wish this game moved on beyond finding the boy, which Janey has gotten extremely good at.  If she had to find letters or numbers or shapes, I think she'd be motivated to do so.

8.  Noodle Words

This is a very, very well designed and cool app.  You open a magic box of words, pick a word, and then play with the word.  For example, "surprise" lets you get all kinds of surprises by touching it.  There are little guys at the bottom of the screen that interact with the words.  It's a nice clean looking screen graphically, so the word stars, and I think Janey has learned to recognize which words she wants to play with.  I wish they'd expand this to much more words.

9.  GoFun

Here's one of those "why in the world does she like this?" apps.  It's a puzzle app.  You pick a picture and then it turns into a puzzle to do.  The problem is that the puzzles are very badly done---with strange divisions into pieces and not great pictures.  Janey is obsessed with one of a leprechaun, and does the first few pieces of it over and over.  She never finishes it.  There are lots of puzzles, anyway, including a bunny one and a clock one she's done now and then.  I've downloaded all kinds of better puzzle apps, or better in my eyes, but they have no appeal to her.

10.  Working on the Railroad

Another app I wish was better, but one Janey likes a lot.  It consists of a video of the song being sung, and then a few "learning games"---putting shapes into, for some reasons, large letters, simple puzzles, etc.  The song is sung nicely and I think having it in the background during the activities keeps Janey working on them, but I wish there were more of them and they were a little better designed.

So there's her list.  This is no means a list of the best apps I've found.  There are many fabulous apps out there, often for free or for very small amounts of money, which is what I love about the iPad.  I'd love it even more if Janey liked more of those apps.  If someone could design a learning app that would truly appeal to autistic kids, they would be a hero in my eyes.  I'd love something that combined the appeal of FindMe with the design of Noodle Words and the letter learning of FirstWords, with music that is well done like in Working on the Railroad, and depth like GoFun.  If there was an app like that, and it was expandable, I'd pay pretty good money for it, and I'm sure a lot of schools would too.  But the designer would have to actually understand autism, or at least Janey's form of autism.  They'd have to get that autistic kids won't work for rewards they don't want, that music and moving objects are a huge draw, that repetition has to be a part of it, but with very gradual changes build in so the kids can't just do the same thing over and over for hours, that you have to design with the kid in mind and not the parents.  You can make a beautiful, full featured, amazing app that kids with autism will never touch, if it doesn't appeal to them.  Or, sadly, you can make a slapped together stupid app that for some reason appeals to autistic kids, and they will play it for hours.  That's life in Autism City, I guess.